View Full Version : Still struggling
Hi all
I am still struggling. I have been on the ALS train for a while now and had a normal emg last week of my legs and arms. My left foot and leg has been giving me issues.
Most of my other symptoms have gone away of which there were many.
But what has remained is that I am still constantly biting the right hand side of my tongue at night. It seems to drift to the right side when I am relaxed making me think that the muscle on that side must be weak and it's being pushed over by the stronger side. It then sore and rubs against my teeth when I am talking. I sound like certain words are slurring, particularly when I am saying them in a sentence.
I have had my tongue checked by a neurologist twice and he has said it is normal. Yet I am still dealing with these symptoms. The emg doesn't pick up bulbar unless done in the region. I don't know where to go from here. I have tried ignoring it and I have felt less anxious and yet it persists.
What do you think??
ServerError
14-01-17, 17:10
I think you're absolutely fine. The medical tests prove it.
I also think you have an anxiety disorder that has triggered physical symptoms that you wrongly link to ALS, and I think you focus on certain regions and end up feeling things that aren't really even happening. Because of the effect this has on your nervous system and your mind, I think you experience these symptoms even when your anxiety is lower. I also think you kid yourself that you're feeling less anxious in order to supply "evidence" that it really could be ALS.
Basically, I think you're physically fine, but in urgent need of help with your anxiety.
Your tongue does that only because you're relaxed/asleep. It has nothing at all to do with any weakness. You're biting it because you most likely clench your teeth while you sleep. You've been cleared medically so there's no valid logical reason to hold onto this irrational fear.
That's what I think ;)
Positive thoughts
Sphincterclench
14-01-17, 17:12
youve had highly trained professionals and test results tell you its nothing. As sympathetic to your plight as I am, I dont think there is anything i can tell you that will be any help at all.
I do appreciate all that everyone had said. It's just so hard not to worry. Even whilst I'm speaking to my fitness earlier I felt as though I was slurring with lots of saliva. And now my tongue is sore from rubbing against my teeth whilst talking.
I just feel so paranoid about everything I feel just now.
I have the psychologist again on Monday.
---------- Post added at 15:36 ---------- Previous post was at 15:30 ----------
I do appreciate all that everyone had said. It's just so hard not to worry. Even whilst I'm speaking to my fitness earlier I felt as though I was slurring with lots of saliva. And now my tongue is sore from rubbing against my teeth whilst talking.
I just feel so paranoid about everything I feel just now.
I have the psychologist again on Monday.
AnxietyKillinMe
15-01-17, 16:13
I'm in the middle of an ALS fear too and I can't wait to get my EMG in 12 days now. I've been clearled physically by my neuro but he still wanted to put my mind at ease with it. The thing with it is, you either have limb onset or bulbar onset not both. So like I've had body wide twitching for over a month now, random feelings of weakness and muscle aches and stiffness mostly in my legs but also somewhat in my hands just to name a few. With all of my symptoms I'm having I know there's no way in hell that if I have als that it won't show up on my emg. But that's also just it. If my emg is clean then I'll stop worrying about it, I won't move on to bulbar because if I had bulbar all of my symptoms would be related to that and I wouldn't have any of my other symptoms in my limbs. Same goes for you. Clean emg with a clear neuro exam = no als or mnd of any kind. I wish I was in your shoes right now I'd probably cry tears of joy. Stop worrying about it. Its one onset or the other not both.
I think you need aggressive phobia therapy. If you're not doing CBT with in vivo exposure therapy, you need to start ASAP.
Another way of potentially looking at this is that ALS is incurable regardless of what stage you are diagnosed at. Meaning that if you have this (which you don't, and have had tests from experts to confirm this) there would be nothing you could do. This disease is not like many cancers, where the sooner it's diagnosed the better the chances are of it being cured. What I'm getting at is, why are you so desperate for a diagnosis of this disease when there would be nothing you could do for it? What difference would having this diagnosis make? It's not as though you would get any treatment as such, other than palliative care. Live your life for today (and today you do not have ALS).
Als is an incredibly common fear among hypochondriacs, you're not alone. But it's not a vague disease. I can understand how hypos can worry about ms, certain types of cancer, etc but it blows my mind that people fixate on als because in general, it's an obvious disease. And trust me, I've struggled with the fear as well.
I'll let you know right off the bat that a neuro can smell that disease from a mile away most of the time. If it's not blantantly obvious when they first meet their patient, then it becomes obvious during the neurological exam. If something comes up abnormal, then and only then do they follow up with an MRI/emg/etc.
As unfortunate as it is, the emg will not give you relief. You'll doubt the results just like you doubt the doctor, and you'll continue to google and read horror stories and try to convince yourself you won't die from als but the reassurance you're seeking will only make you feel worse and worse.
It's as simple as this: failure not feeling. Many of us who have gone through this particular fear have sunk so far into the rabbit hole that the only saving grace was a cocktail of medication to cool our nervous systems down and slow our brains so we can rationalize again.
Until you have buried this fear in the ground for good, you will continue to relate any and all benign symptoms (twitching, cramping, soreness, pain, stiffness, joints cracking, shortness of breath, tripping up on your words, perceived weakness, fatigue, etc) to the "inevitable" disease that you do not have.
---------- Post added at 17:49 ---------- Previous post was at 17:46 ----------
Another way of potentially looking at this is that ALS is incurable regardless of what stage you are diagnosed at. Meaning that if you have this (which you don't, and have had tests from experts to confirm this) there would be nothing you could do. This disease is not like many cancers, where the sooner it's diagnosed the better the chances are of it being cured. What I'm getting at is, why are you so desperate for a diagnosis of this disease when there would be nothing you could do for it? What difference would having this diagnosis make? It's not as though you would get any treatment as such, other than palliative care. Live your life for today (and today you do not have ALS).
This is the conclusion all hypochondriacs eventually have to come to, especially those fearing terminal diseases. Brilliant post.
I am so what on the same fear. But I also fear MS more. I have heard and read ALS only causes twitches after the muscles has died. Which would mean that muscle would not respond or work. Then it would start twitching there. I have also heard ALS starts in certain area of body the progresses. Which would make my twitching and probably everyone else's in this forums not make sense to a ALS syptom. My twitching is all over. From legs to arms to hands to feet even sides and butt cheek area. And my twitching can move from one limb to next to arm to other arm in matter of seconds. Which I heard is not how ALS would cause twitching. Twitching suppose to be secondary symptom of ALS not a primary symptom. Meaning you would more then likely see that your muscle is much smaller then the other one on your other arm or leg or you would be noticing that the muscle is not working you have no control over it or what the muscle is suppose to move. Or both of the above.
This is coming from a guy who gets twitches everyday all day. Have been for 11 months now. And funny thing is my twitches didn't start till 2 weeks after I ended up in ER with panic attack about my heart. Then I started noticing them.
What I'm trying to say people with our stress and anxeity all worry over this for a reason because we all get the twitches and run to google. I did it and I'm sure plenty of others did it also. Now do we all have ALS? I'd put my life savings on it that we don't. It's a very rare disease. Ms is more common and even it is rare. But Our symptoms lean way more towards MS then ALS but why do we just assume we have ALS? Because we always assume the worst in everything we worry about on this forum.
I had a colonscopy this past December and I had every symptom of colon cancer. I mean down to the T. And was worried to death. Guess what it came back clear with minor inflammation in rectum and minor hemmoroids. And GI Doctor said no polyps found and I won't need another for 10 years (which is the max time they give for colonscopy follow ups). What time trying to say is so many in this board go thru this scare and there is a reason for it because we all start twitching like crazy from our stress and anxeity causing our nerves to Randomly fire like a machine gun with unlimited ammo. If the test will make you feel better get them. What I have learned is every time I go thru this big work up of thinking I have something it affects my gf and family a lot also. And when I go get the all clear it makes me look bad to the and crazy. I hate thinking people think I'm crazy. I know what I feel but at same time we need to listen to people around us also. They are thinking straight like we use to think before we came down with anxiety.
My family is to point they don't even want to hear it anymore. And I can't really blame them they have out up with me for a year doing this. And to be told by 3 different doctors over different things I'm fine.
Listen to the people on the board I'm sure if they had any doubt you had ALS they would tell you to go get it checked out. But so many have been thru this and are still going thru it.
---------- Post added at 18:27 ---------- Previous post was at 18:14 ----------
:roflmao:
Another way of potentially looking at this is that ALS is incurable regardless of what stage you are diagnosed at. Meaning that if you have this (which you don't, and have had tests from experts to confirm this) there would be nothing you could do. This disease is not like many cancers, where the sooner it's diagnosed the better the chances are of it being cured. What I'm getting at is, why are you so desperate for a diagnosis of this disease when there would be nothing you could do for it? What difference would having this diagnosis make? It's not as though you would get any treatment as such, other than palliative care. Live your life for today (and today you do not have ALS).
I also agree. Everyone on this board is so scared of what they might have but in the end there is not much we can really control. Maybe that is what scares so much of us in the first place. MS and ALS is not something any of us or doctors can change. It's not something the person did wrong to get it. It just happens. It's pretty much your body turning against you without a reason.
But I do feel the symptoms we get as anxeity suffers lean towards MS not ALS when you read the actual symptoms. Anxeity can cause a lot of different things to go on with your body but it does not kill your muscles. It can cause muscle pain and soreness and fatigue tho.
I'm not saying MS is good to have but compared to ALS it is. people with MS live full life's and only 1-3 of them become disabled. There was even a lady climbed Everest after having MS for years... If that's not saying something then idk what is.
And to the original poster no I do not think you have ALS or MS was just stating the facts.
Thank you and I appreciate all that you say. I know you are fed up listening to me but I'm
Honestly At a loss. This stuff is happening to me.
I genuinely believe I have bulbar onset.
* my facial muscles look less toned and flatter and I genuinely believe the tone has weakened
* when I close my left eye, the eyelid twitches constantly and doesn't go away.
* lips also feel and look flatter to me and when I smile the corners are wider than usual.
* my cheeks are caving inside my mouth near touching my teeth.
* when I tense my tongue and stick it out it deviates to the right
* biting my tongue in sleep.
* scalloped tongue on one side.
* slight slurring of speech and it also seems like I have one of those mouth pieces in playing a game of speak out or I've had a few drinks those around me say my speech is perfectly normal and no different
* need to clear my throats after drinking liquids
* can't seem to houk (if that's even the word) up morning post nasal drip the way I normally could weaker now
I have seen a neurologist several times and his exams all normal. I ffear it's too early for him to clinically see it.
I also had a Normal emg on 5th Jan done by another
Consultant who says he diagnoses ALS weeklybut that was only of my limbs and hands
I don't believe this is all anxiety and I don't know what to do now.i just want to know either way.
Thanks for listening I really do appreciate
It.
ServerError
18-01-17, 18:59
I'm not going to sugarcoat my response to you. I'm just going to spell it out. You are currently ruining your life and wasting time with this totally irrational belief.
Let's get one thing straight: a person believing they have a condition has no bearing on whether they actually have it. Only objective medical testing can prove it, and your tests are all clear. Let's be clear, ALS is never "too early" to be clinically proven. You either have it and they know it, or you don't. And they know that too.
I'm curious as to what further help you want here. We can sympathise, advise and challenge your irrational thoughts, but the bulk of it is on you to start digging yourself out of this hole.
I'm not going to sugarcoat my response to you. I'm just going to spell it out. You are currently ruining your life and wasting time with this totally irrational belief.
Let's get one thing straight: a person believing they have a condition has no bearing on whether they actually have it. Only objective medical testing can prove it, and your tests are all clear. Let's be clear, ALS is never "too early" to be clinically proven. You either have it and they know it, or you don't. And they know that too.
I'm curious as to what further help you want here. We can sympathise, advise and challenge your irrational thoughts, but the bulk of it is on you to start digging yourself out of this hole.
Seconding this so hard. You either have it or you don't. A neurologist either diagnosed you, or didn't. There is no weird limbo in between. All als patients have something clearly wrong with them upon first visit. The only reason you hear stories of them going through a long diagnosis process is because no doctor wants to hand down a incurable, untreatable, and horrific death sentence unless hey are absolutely sure after one, two, maybe even three emgs and clinical follow ups. Everything else must be ruled out before they even mutter that word to a patient.
All of your symptoms are perceived, which is exactly why no one else can see anything wrong with you. As long as you keep thinking you have als, these symptoms will persist. If you're unwilling to fight your thoughts, your thoughts will win, and you'll be stuck in this rabbit hole forever.
Three fairly quick tests to rule out bulbar onset:
1: Can you whistle, if you can you don't have it
2: Can you touch each tooth with your tongue if so you don't have it
3: Can you blow up a balloon if you can you don't have it
Bottom line, you have a a fairly common fear, about a fairly rare disease. Not only that, you are going down a very well trodden path with regards to this: first you have anxiety, then you notice a twitch, then you go to google get outdated information, then you panic, then you twitch more, finally you go to a neurologist, who conducts a clinical, which you pass with flying colours but gives you and emg, to calm your anxiety and when you have no abnormalities, your mind says oh it must be bulbar onset..
You have anxiety which is real, you don't have a very rare onset (bulbar) under 20% of all cases with one symptom twitching (confirmed to happen in less that 0.2% of all ALS cases where twitching is the initial symptom to a disease which has an incidence rate of 2 in 100,000 and has a prevalence for males over females and has its peak incidence in the 6th to 7th decade of life. So what I am able to assertain from your profile and post you have more chance of being struck by lightening on your way to pick up your lottery winning after having purchased the winning ticket from a ginger midget who was carrying a pot of gold while standing beneath a rainbow
Either go get therapy for your hypochondria or continue to torture yourself. Half the things you listed have nothing to do with ALS. Eyelid twitching is ALWAYS benign in regards to ALS as the eyes are completely unaffected. Also, the facial muscles are not part of the bulbar region. You are scared of things that you frankly are ignorant of. Get an SSRI, call a psychologist - we have been going over this for months. I have been down the ALS rabbit hole, and while I certainly was scared and had to be slapped upside the head by posters like Hancock, I never insisted I had the disease in the face of clean EMGs and countless people telling me I don't have it. This will ruin your life if you don't stop this nonsense. This is about as blunt as I can be here. I almost lost my girlfriend over ALS phobia. Don't do this to yourself.
Thanks
My bottom lip has definitely changed at the corners the lip is almost flat. What could cause this?
My tongue also looks thinner.
Emg was of limbs not bulbar.
I don't twitch except for my eye hence why I think it's too early to fond.
I can whistle, blow up a balloon and touch teeth. However despite this it does not just happen all of a sudden, loss of these functions is gradual. I know no one here believes me but I'm deteriorating and it's just too soon for it to be noticed by others.
I have a visual evoked potential test today due to me failing a visual field test at the start of all of this.
From what I take of it twitching is after the muscle is dying which would mean that the emg would pick up something wrong before the person ever noticed a twitch. And I have also heard it doesn't matter where they do the Emg that if you have it you have it. You seen a specialist who knows what he is doing and if he has any concerns you would have been told.
---------- Post added at 12:20 ---------- Previous post was at 12:13 ----------
I also am having crazy twitches and weird soreness/ feeling in my legs. One worse then the other. But like you I have not seen a neuro when I told my GP about the twitches she did check me for weakness and found none. I don't notice any weakness as of now and have been twitching for almost a year now.
And you say you want to know either way. But they have done told you. I actually don't think I have even read that a neuro has missed something like ALS. They are trained to know what to look for. It's their job and worst disease they see or will ever see.
I see a lot of special pleading here. Things like "I think it's too early to detect, I only had an EMG on a certain body part, my lips and tongue look funny etc."
All you're doing here is trying to justify your concern. If you had ALS advanced enough to be creating symptoms, a neurologist would see it. It's even more illogical to assume that this neurologist not only missed it once, but repeatedly.
You're chasing a diagnosis and you're using totally warped logic in order to keep yourself concerned.
You really need to stop this.
Does anyone else agree that you face is caving in or your lips are flat etc? Have you asked the people who know you the best if they can see a difference? Health anxiety causes faulty perception. It's kind of like anorexia that way, eg the anorexic individual looks at herself in the mirror and sees her reflection as obese when in fact she is the extreme opposite. Also, aging causes physical changes like those you are describing. I can't remember if you have said your age. Finally and most importantly are you seeing a psychiatrist?
Thanks
My bottom lip has definitely changed at the corners the lip is almost flat. What could cause this?
My tongue also looks thinner.
Emg was of limbs not bulbar.
I don't twitch except for my eye hence why I think it's too early to fond.
I can whistle, blow up a balloon and touch teeth. However despite this it does not just happen all of a sudden, loss of these functions is gradual. I know no one here believes me but I'm deteriorating and it's just too soon for it to be noticed by others.
I have a visual evoked potential test today due to me failing a visual field test at the start of all of this.
Yes it does happen all the sudden. I know someone with bulbar onset als and he literally woke up one morning slurring his words. His wife immediately took notice and so did his son. They let it go thinking maybe he had a cold but within a week or two, it got progressively worse and they went to a neuro. Before they even did an emg in him, the neuro warned him to prepare himself. He got the news right after he was done with the test. A few months later he completely lost his voice. And a few more months after that, he can barely eat on his own and is refusing a feeding tube (god bless him) as he's choosing to go out naturally and without medical intervention. He's 56.
So no, you don't have als. And you definitely don't have bulbar onset als. A neuro would not have missed that, no way in hell. It's obvious you won't listen to reason, and a lot of people have already given you fantastic advice and urged you to seek help. If you choose not to seek help in the form of therapy and medication, there's nothing left for anyone to say to you.
Hi
Yes I am seeing a psychiatrist and I'm on 60mg of Prozac daily.
No one notices the bottom lip but to be honest with you it's subtle at the moment but it's there. I'm a female who does their make up every day in life and look int he mirror to apply and reapply lipstick and I know something has changed making it flatter on one side. I can also feel food and saliva at it when I eat which is new.
It's inside my mouth my inner cheeks that seem to be caving. I've checked my family and theirs don't look the same. I'm going to go to the dentist to ask about this.
I am 36. I have recently lost a lot of weight almost 3 stones due to having a baby and anxiety.
I know myself all this sound mad that a neurologist would have missed it all. But yet these symptoms exist????
Hancock I read a woman whose husband had bulbar and she said he is bow starting to loose his lip seal, another with bulbar said they could still whistle just which upset him as he loved to whistle but this didn't happen right away.
I don't want this to be happening to me but something is wrong. I'm going to ask my gp for a second opinion altho she will never agree to it and the mnd specialist does not do private work any more only nhs. Wtf am I going to do??
Keep working on your anxiety and move on. The lips aren't part of the bulbar region either.
Also, when you have ALS, you have activity in other parts of the body that would show up on an EMG. So yes, a clean EMG is almost ALWAYS ALWAYS indicative of no ALS. No matter where the EMG was. What is even MORE important than a clean EMG is a clean clinical. You have had both. Perhaps switch meds or ask for a dose of ativan or klonopin to help get you through this time of anxiety. Bulbar is fast and brutal and you've been here for months now trying to convince us you have ALS. Stop it.
Stop obsessing about a disease you don't have? That's probably a good start to your "wtf am I going to do?" question. Get on some meds if you're this obsessed and can't think objectively, a lot of us had to do it to see reason.
And as a sidenote, stop reading stories about people who have als. It'll only make you feel worse.
It's really simple... you don't have this. Literally 5 days after being given the all clear you're right back to square one. You're posting on an anxiety forum because you do have a mental illness that is affecting you in a very negative way. That is the illness you should be discussing.
I wish you peace and healing....
Positive thoughts
I have copied the following from a previous post of yours. Please read it and try to believe it. It was written by an experienced neurologist about MS but is also relevant to many other fears.
It's important for you to acknowledge that clinical diagnosis, particularly where neurodegenerative diseases are concerned, is quite complex and under no circumstances can accuracy of such a task be accomplished by attempting to draw subjective comparisons between the symptoms you feel and some list of clinical findings consistent with Multiple Sclerosis. I can tell you that with a great deal of confidence and certainty because I'm a retired neurologist and was in practice for more than 40 years.
The case with absolutely all neurological disease is the specific company that certain symptoms keep, or in other words the specific presentation of very specific symptoms known in clinical medicine to be distinguished from other conditions. You make no mention of a single one of these specific caveats which would suggest the possibility of MS.
Self-diagnosis can be the devil's own quill in persons with health anxiety, for the more apprehensive they become that their summations are accurate the more anxiety is produced, followed by an increase in somatoform or physical symptoms which only serves to reinforce their notions. It is a cycle that can be very difficult to break and it's critical for you to realize that the reason for such resistance has to do with the development of a specific type of fear that suggests a threat to survival.
This type of perception causes the brain to respond in a very particular manner that is genetically pre-wired in the brain to identify and overcome the threat such that feelings of safety are re-established. Again, this is an innate survival response induced by the brain and it's the very process which causes persons to feel compelled to confirm their suspicions and because it feels natural, the individual is often convinced by the "gut" feeling that their suspicions are accurate. In actuality, the exact opposite is most often the case and efforts to self-diagnose are far from the requisite accuracy.
Indeed, anxiety can induce physical sequelae very similar to some neurological diseases and the reason for this is quite simply that both anxiety and true neuropathology invoke changes upon the one and only existing nervous system. Thus, the layperson looks directly past this obvious fact and instead is driven to make associations which by their interpretations, seem completely rational and substantiated.
RLR - still my go to.
It's a great reference Ellen.
---------- Post added at 15:16 ---------- Previous post was at 15:05 ----------
Elen
I have tried so much not to be posting and have not for a week or so.
I am on 60mg of fluoxetine and feel calmer but the worry never ends.
I really believe I have bulbar ALS.
I know that brisk reflexes are a sign of umn damage and I have. Risk reflexes.
Along with noticing my speech sounds slurry at times, or certain words. At times just feel like nothing is coordinating in terms of mouth and tongue. My speech just isn't as articulate as usual. when I drink liquid it seems like it's sitting at the back of my throat and I clear it.
Other issues I am having is scalloped tongue one side, it looks thinner. Bottom lip has lost bulk at each side. Biting tongue and cheeks. When I look in my mouth my cheeks are falling into my teeth.
I have seen a neurologist and I think that I am at too early stages for my symptoms to be noticed. I did have an emg of my legs, right arm and ulnar which was reported as normal. However emg does not pick up bulbar unless tongue, jaw our throat etc are tested.
It's on my mind constantly.
ServerError
29-01-17, 10:56
If it's too early to notice, how are you able to notice it?
This is a good point. The changes are subtle in terms of the speech and I feel like it is only me that can notice at the moment? Also I worry the neurologist is just putting everything down to anxiety which is what he has said about the brisk reflexes.
merged with your previous thread as a lot of your worries have already been addressed there
ServerError
29-01-17, 11:20
This is a good point. The changes are subtle in terms of the speech and I feel like it is only me that can notice at the moment? Also I worry the neurologist is just putting everything down to anxiety which is what he has said about the brisk reflexes.
Have you ever considered what it takes to become a practicing neurologist? The years of study - more and more advanced and focused as you go. Then there's the wealth of knowledge, expertise and diagnostic skill a neurologist must have. And of course, they are constantly monitored and evaluated. One false move, and a life's work and hundreds of thousands of pounds can go down the drain.
So why should you be so unfortunate as to get the one maverick neurologist in Britain who just fobs his ALS patients off with anxiety diagnoses?
And why would you be a better judge of whether you have ALS than a neurologist? You have anxiety - wouldn't that make you a terrible judge? Your mind is riddled with misinformation and a propensity for irrational thought, but your neurologist is an expert in ALS. I know whose diagnosis I trust. It isn't yours.
He is a very experienced neurologist. He has been practising for 30 plus years. He is a general neurologist but lead specialist for the MS for the whole country's Neuro centre.
And yet I am still very worried he is misdiagnosing me. I want to see the ALS specialist but it seems like you only get to see him when your diagnosis is more or less confirmed.once the neuro sees you and has concerns it is als then you are referred to the ALS specialist. Same with my neurologist he receives all patients who are suspected ms which was at first whatmy gp was querying for me.
My thoughts are that it takes a while for the symptoms to develop so that they can be seen clinically? I've seen him 4x over period of 6 weeks.
He says all examinations are normal. The only thing was the brisk reflexes but he says Thai is anxiety. These symptoms are not going away.
"My thoughts are"
It doesn't matter an iota what your thoughts are. You don't have ALS. Jesus, stop this nonsense.
From another member with ALS fears... read this about 100X and then read it some more!
Now, I am nearly fully recovered from that stupid fear. I must inform you that all symptoms are gone. All these symptoms were just anxiety symptoms. If an ALS fearer is reading this, I want to say that it is most irrational and most time-wasting fear ever. IF YOU CAN USE YOUR ARM OR LEG IT IS ANXİETY NOT ALS.
Positive thoughts
From another member with ALS fears... read this about 100X and then read it some more!
Positive thoughts
Thanks and that is great when you are worried about limb onset buts its bulbar that is consuming me.
---------- Post added at 18:07 ---------- Previous post was at 18:02 ----------
"My thoughts are"
It doesn't matter an iota what your thoughts are. You don't have ALS. Jesus, stop this nonsense.
Why is it nonsense Josh?
It is me this is happening to. Things are changing in my face and my throats and my speech. It is only a matter of time before it becomes clear to the doctors and my family.
Even when I have looked in my throats my tonsils look further back. I think it is. Cause my tongue has lost bulk at the back and it's making the tonsils sit lower down. I have always had problems with my tonsils and I am very familiar with what they look like and where they normally sit in my mouth.
I guess if I asked to be referred to someone who looks at the vocal cords they will see atrophy and and possibly a speech pathologist? I am going to go to the dentist about the inner cheeks.
I can't settle until it is completely ruled out. Here they do not emg the tongue, jaw or throat. I wish I had pushed for that.
Stop being so arrogant as to think you are more qualified to diagnose yourself than a highly trained, specialized doctor. You have moved past anxiety and into pure arrogance and self sabotage.
Stop being so arrogant as to think you are more qualified to diagnose yourself than a highly trained, specialized doctor. You have moved past anxiety and into pure arrogance and self sabotage.
Sound like another stroud to you? :lac:
Serious illness could (and one day will) happen to any of us. Yes, your neurologist could have missed early onset of ALS. It is possible but highly unlikely. Yet your anxiety is focusing on that...so write down on a piece of paper...
I MIGHT HAVE ALS, I MIGHT HAVE ALS, I MIGHT HAVE ALS...
See how you feel by facing your fear instead of looking for more ways to escape it. Maybe then you will realise that we cannot live our lives fearing what might happen to us tomorrow.
Wish you well.
Stop being so arrogant as to think you are more qualified to diagnose yourself than a highly trained, specialized doctor. You have moved past anxiety and into pure arrogance and self sabotage.
Josh I don't think for a minute that I am more qualified. All i know is my own body and things are changing. It is scaring me. It is absolutely not arrogance and to be honest I am one of the least arrogant people out there.
I just genuinely think something is really wrong. I have just had a glass of wine with dinner and feel even harder to articulate my speech.
I have an opthamology app on Tuesday because at the start of all of this I faileda visual field test twice. Although most als people say no involvement I read About someone bulbar starting this way. I have had constant twitching in that eyelid for months when I close the eye, plus light sensitivity and it's the eye that failed the visual field test.
I want nothing more than to be assured that there is absolutely nothing wrong.
---------- Post added at 20:53 ---------- Previous post was at 20:53 ----------
Sound like another stroud to you? :lac:
Hancock I think that's pretty low saying that it each to their own.
---------- Post added at 20:57 ---------- Previous post was at 20:53 ----------
Serious illness could (and one day will) happen to any of us. Yes, your neurologist could have missed early onset of ALS. It is possible but highly unlikely. Yet your anxiety is focusing on that...so write down on a piece of paper...
I MIGHT HAVE ALS, I MIGHT HAVE ALS, I MIGHT HAVE ALS...
See how you feel by facing your fear instead of looking for more ways to escape it. Maybe then you will realise that we cannot live our lives fearing what might happen to us tomorrow.
Wish you well.
Thanks
I appreciate your post.
When I was in recovery this is how I was able to think. 'I would think well of it happens it happens' (prior to ALS it was cancer I was terrified of'.
But since having my 3rd baby 4 month ago it's been a horrific ride. The psychologist I work with has said that this is where she wants me to get to. To be able to 'sit with the tiger in the room',I.ethe possibility of als and get on with my life. I am due to start cbt too.
Thank you x
It's not low, this is exactly what he did on anxietyzone on a daily basis. It didn't matter how much reassurance he got from us, from doctors, from therapists, etc. He was thoroughly convinced even though there was no medical evidence indicating a disease process.
If you wanna be like that, be my guest. All you're doing is wasting money chasing a disease that doesn't exist. I know someone who has bulbar and what you're describing is nothing like what he experienced. He woke up one day and both his wife and his son immediately took him to the hospital when they heard him speak (they thought he had a stroke in the middle of the night). He was diagnosed with als pretty quickly.
Don't be ridiculous, josh is right. If you really, honestly believed something was wrong with you the last place you would be posting is here. Except you know you have anxiety issues, your docs know you have anxiety issues, we know you have anxiety issues, your therapist knows you have anxiety issues...so guess what that means? You should probably start working on your anxiety issues.
It's absolutely depressing how most terminally ill people have a better outlook and a better attitude than a lot of the people on health anxiety forums across the web.
"I had a glass of wine and it was harder to articulate"
Do I need to point out that that is what alcohol does to people? Lol, you are approaching troll status with comments like that.
One of the things that strikes me square in the eyes in the lack of acknowledgement that these posts are on an "anxiety forum". The posts about heart attacks? The LAST place I would have gone was an anxiety forum when I was having a heart attack was an anxiety forum ~lol~
By no means should this be posted on an ALS forum because not only does the OP NOT have ALS but it would be so totally disrespectful to those actually suffering to the point no words would suffice.
I'm out... LE, waste your life away on a fantasy but to post and argue total fact and rationality is a waste of your time and life. The comparison to "Stroud" is quite accurate. Not only was this person a proven troll, but even before that was exposed, the posting pattern was quite similar in that he did everything to maintain the irrational fantasy.
Good luck and as always...
Positive thoughts
"I had a glass of wine and it was harder to articulate"
Do I need to point out that that is what alcohol does to people? Lol, you are approaching troll status with comments like that.
I can assure you I am not a troll!!
What I meant was that after one small glass of wine my already difficult to articulate speech felt much worse.
---------- Post added at 00:19 ---------- Previous post was at 00:10 ----------
One of the things that strikes me square in the eyes in the lack of acknowledgement that these posts are on an "anxiety forum". The posts about heart attacks? The LAST place I would have gone was an anxiety forum when I was having a heart attack was an anxiety forum ~lol~
By no means should this be posted on an ALS forum because not only does the OP NOT have ALS but it would be so totally disrespectful to those actually suffering to the point no words would suffice.
I'm out... LE, waste your life away on a fantasy but to post and argue total fact and rationality is a waste of your time and life. The comparison to "Stroud" is quite accurate. Not only was this person a proven troll, but even before that was exposed, the posting pattern was quite similar in that he did everything to maintain the irrational fantasy.
Good luck and as always...
Positive thoughts
As you have said I know a large part of this is anxiety. However I am still worried that the symptoms I am having are not just anxiety.
I am so insulted you would even suggest I was a troll. Unfortunately with the site not existing any more I was an active member of anxiety zone for years and my name was hamsterswheel and you Fishmanpa helped me through many a health scare. So whatever this guy Stroud is suposed to have done one thing I know is that I am NO troll.
I have scrambled from where I was a few weeks ago to where I am now. I have gone from not being able to eat or drink for pure fear, crying constantly, not leaving my room, admitting myself into a postnatal ward to where I am today. I am on meds, I am eating again, taking exercise daily and working with a psychologist. So how dare you or anyone else suggest I am a troll. I was on my knees six weeks ago with a new born baby and two other children trying to get myself well to just be able to function to look after them. I am now functioning daily hence I have been reducing my positive here. It today I felt I wanted to ask for some kindness and reassurance. Because yes it is an anxiety forum and I am suffering terrible anxiety over these symptoms.
Just because I am terrified of the symptoms I am having and yes maybe my anxiety over it is getting he better or me. But it doesn't mean I'm not worried sick.
So again thanks for the continued support.
Ah yes... hamsterwheel... I do recall your posts and slapping you upside the cyber hear a few times ;) . My apologies for my suggestion but I'm stating about the similarity in defending the irrationality. Ok.. time for a reality check. You know and I know this is anxiety related. Could there be something physical going on? Sure... Is it sinister? IMO not in the least. At worst it's some normal life niggle exasperated by your anxiety.
Hope you feel better soon...
Positive thoughts
Catherine S
30-01-17, 01:20
Reading your last comments LE, you actually sound like you could have post natal depression. Hormones at any time in a woman's life can be chaotic, but hormones after giving birth can be horrendous. Even before you had this little baby, do you think your fears and extreme anxiety could've been down to a severe hormone imbalance? You have other children, so this could have played a bigger part than you imagine. ..some women end up really ill after giving birth and all because of hormones, or lack of them to be exact.
You have young children, the youngest being only 6 weeks old....you must be exhausted in mind and body. Fighting health fears adds to that, giving you a feeling of hopelessness. The clue for me is that you say you've been doing really well, seemingly until you recently gave birth. This sounds like classic post natal depression.
I have only ever been a member of nmp and no other forum, and only know about Anxiety Zone through the people now on this forum. I can well understand their frustration to be honest as we also suffer Trolls on nmp too, and it really hurts genuine anxiety sufferers when they realise that some of the people they have been trying to help are just playing games. Ive heard tell of Stroud, and think that because of him people are understandably very wary.
But I don't know you, other than reading what you say in this thread and my opinion for what it's worth, is that you need someone to check your oestrogen /progesterone balance. That would be a start I think. It doesn't sound like much I know, but you'd be surprised at how much other things can fall into place if these hormones, as well as testosterone and thyroid levels are behaving themselves.
Take care x
ISB
Oh, and by the way, you really are not suffering from ALS. So that should be a weight off your mind.
Keep in mind the way you so staunchly defend your irrationality. No matter what is said, you have a reason to continue despite anything anyone says, medically or otherwise.
Take that to heart because it's preventing you from healing.
Positive thoughts
^^That's it for me, Fish. I, too, was once in the ALS rabbit hole and now I'm not, but even when I was, I appreciated and listened to advice, even if I was still scared like hell. I didn't argue with people and not believe neuros and insist I had ALS, but start countless threads on an anxiety board about it. If you think it's ALS, then go post on the ALS board. I actually think you should do that if you truly believe that's what it is, because we can't help you here, apparently.
Catherine S
30-01-17, 02:28
Josh, just curious. What does being in the rabbit hole mean for you then? Because if as you say you actually took on board everything everyone was telling you...the doctors and the people advising you on forums such as this one without questioning it....then logically, you weren't really in the rabbit hole were you. Just an observation.
ISB
If you think it's ALS, then go post on the ALS board.
Do that and you'd be banned as Stroud was... multiple times. No, it's just totally disrespectful to post on disease forums when you don't have the disease.
Positive thoughts
Do that and you'd be banned as Stroud was... multiple times. No, it's just totally disrespectful to post on disease forums when you don't have the disease.
Positive thoughts
Agreed.
---------- Post added at 02:35 ---------- Previous post was at 02:34 ----------
And as for posting on the als boards, no one that hasn't been told "it might be als or it is als" should be on those boards period. I honestly think there's more anxious people on there than people with als. It's absolutely disgusting.
This has all become ridiculous. I can understand why Josh made the comment about you approaching troll status. So much advice and reassurance has been given to you here and it has had no impact on you at all. You have made up your mind that you have ALS. You have been examined by an expert and told you don't have it. Do you honestly believe that he examined you but didn't bother to consider bulbar? That is just silly. He would have seen all forms of ALS and he would automatically consider bulbar. Unlike you he knows what to look for. I look in the mirror and put makeup on nearly everyday. You get used to seeing your own face. But if any individual were to stand in front of the mirror and stare at one particular area of their face it would begin to look strange. You never used to focus intently on your lips before you put your lipstick on. No one does. We are so used to doing it that we really just glance at our lips. I'm a sceptic and it's easy for me to think that you are making all this up. Especially when you just keep insisting that you know better than anyone else. Maybe it's time you stopped thinking about yourself and started thinking about your children. For their sake I hope you are trying to hide this morbid fear from them.
admitting myself into a postnatal ward to where I am today. I am on meds, I am eating again, taking exercise daily and working with a psychologist.
Does your psychologist know you're posting on an anxiety forum? I ask because the reassurance seeking would be highly discouraged. They should know as it can hinder your recovery.
Positive thoughts
Do that and you'd be banned as Stroud was... multiple times. No, it's just totally disrespectful to post on disease forums when you don't have the disease.
Positive thoughts
There is a section for people who believe they have it, but haven't been diagnosed. It's a better fit for her, since, in her eyes, it's DEFINITELY ALS, and not anxiety.
Capercrohnj
30-01-17, 13:23
There is a section for people who believe they have it, but haven't been diagnosed. It's a better fit for her, since, in her eyes, it's DEFINITELY ALS, and not anxiety.
They ban people on a regular basis in that section especially people who are like this op
Josh, just curious. What does being in the rabbit hole mean for you then? Because if as you say you actually took on board everything everyone was telling you...the doctors and the people advising you on forums such as this one without questioning it....then logically, you weren't really in the rabbit hole were you. Just an observation.
ISB
You aren't understanding me. I never said I wasn't scared or question it - I said I never defiantly ignored doctors and made 1 million threads trying to convince the world I had it. Neither did Hancock or others. Trust me when I say that most of my 2016 was absolutely RUINED by ALS phobia. It controlled every aspect of my life, but even deep down, like most, I knew I didn't have it. The anxiety just sent me to dark places every day, and the OCD had me checking constantly for weakness. What LE is doing is different, though. Starting threads just to argue with and ignore advice from everyone.
---------- Post added at 13:26 ---------- Previous post was at 13:25 ----------
They ban people on a regular basis in that section especially people who are like this op
Well, that's something she will have to deal with then. Since she definitely has bulbar ALS and definitely not anxiety, even though all her bulbar posts are in a hypochondriac section of an anxiety messageboard.
I just want to throw it out there that I really do feel for you, OP. If you're actually sincere about how terrified you are (to the point where reality and fantasy are inseparable for you), that's a painful place to be at. The only reason we're probing you so much is because people with anxiety disorders, especially those with health anxiety, do not need reassurance. That's counter productive to recovery, as fish said. It seems cold, but personally, I never got anywhere with people babying me. The reason I fight my demons so hard is because I can't just sit down and cry, I won't get the response I'm looking for from the people in my life and doctors.
I know deep down you realize you're extremely anxious and it's causing a lot of your symptoms. The als fear is especially strange because it causes some of us to go through a sort of body dyorphic disorder that could remain or is just present during the fear. I never went through that particular stage but MANY people have and convinced themselves that their bodies looked abnormal, atrophied, dented, slimmer, smaller, shrunken, you name it. So they kick it up a knotch and carry around a tape measure everywhere they go so they can check their arms or legs, or they stare into a mirror for hours looking at their tongues.
This fear is incessant, and if you ask any health anxiety sufferer that has been through it, it's the hardest fear to break DESPITE the disease actually being really obvious even in the early stages. There's many people just like you that we've typed up responses for and they just can't seem to let it go because they've read story after story online and scared themselves into a state of complete illusion. Their reality begins to fall apart, and their emotions become facts. Reason flies out the door.
Once again, we've all been there at some point or another. I'd be lying if I said the stray thought didn't still cross my mind. But the difference today is im on correct medication to manage my OCD which helps in the health anxiety department as well, and I can rationalize those thoughts if they stay for too long (which typically, they just come and go).
Once again, if you're really this afraid and you're being genuine, you might want to rethink what you're doing. Maybe you need to be on different medication, it's hard to find the right one sometimes. As another user suggested, maybe your hormones are imbalanced. A lot of mothers seem to lose it when faced with morbid thoughts about death and losing the ability to care for their children. Maybe you need a new therapist, one who doesn't coddle would be preferable to people like us.
Just some suggestions. I don't want you to think we're just evil people trying to push you to the ground. The reason people are still replying is because they're frustrated and they want you to get better. No one on these boards wants someone to fail. So fight your demons, tell anxiety that it cannot control your life like this, and work on it. It's not easy, that's why so many of us just sit around and let our minds take us on sick joy rides. But it's worth it to get this beast under control so you can go back to enjoying your children and your life.
Just want to say I have not had a chance to read through properly and once my children are in bed I will have a proper chance. I really do appreciate all the time and effort that has been spent on this with me.x
I just want to throw it out there that I really do feel for you, OP. If you're actually sincere about how terrified you are (to the point where reality and fantasy are inseparable for you), that's a painful place to be at. The only reason we're probing you so much is because people with anxiety disorders, especially those with health anxiety, do not need reassurance. That's counter productive to recovery, as fish said. It seems cold, but personally, I never got anywhere with people babying me. The reason I fight my demons so hard is because I can't just sit down and cry, I won't get the response I'm looking for from the people in my life and doctors.
I know deep down you realize you're extremely anxious and it's causing a lot of your symptoms. The als fear is especially strange because it causes some of us to go through a sort of body dyorphic disorder that could remain or is just present during the fear. I never went through that particular stage but MANY people have and convinced themselves that their bodies looked abnormal, atrophied, dented, slimmer, smaller, shrunken, you name it. So they kick it up a knotch and carry around a tape measure everywhere they go so they can check their arms or legs, or they stare into a mirror for hours looking at their tongues.
This fear is incessant, and if you ask any health anxiety sufferer that has been through it, it's the hardest fear to break DESPITE the disease actually being really obvious even in the early stages. There's many people just like you that we've typed up responses for and they just can't seem to let it go because they've read story after story online and scared themselves into a state of complete illusion. Their reality begins to fall apart, and their emotions become facts. Reason flies out the door.
Once again, we've all been there at some point or another. I'd be lying if I said the stray thought didn't still cross my mind. But the difference today is im on correct medication to manage my OCD which helps in the health anxiety department as well, and I can rationalize those thoughts if they stay for too long (which typically, they just come and go).
Once again, if you're really this afraid and you're being genuine, you might want to rethink what you're doing. Maybe you need to be on different medication, it's hard to find the right one sometimes. As another user suggested, maybe your hormones are imbalanced. A lot of mothers seem to lose it when faced with morbid thoughts about death and losing the ability to care for their children. Maybe you need a new therapist, one who doesn't coddle would be preferable to people like us.
Just some suggestions. I don't want you to think we're just evil people trying to push you to the ground. The reason people are still replying is because they're frustrated and they want you to get better. No one on these boards wants someone to fail. So fight your demons, tell anxiety that it cannot control your life like this, and work on it. It's not easy, that's why so many of us just sit around and let our minds take us on sick joy rides. But it's worth it to get this beast under control so you can go back to enjoying your children and your life.
awesome post, and what I really mean to say, if I wasn't a grumpy jerk.
Haha don't worry josh, you're still awesome.
Reading your last comments LE, you actually sound like you could have post natal depression. Hormones at any time in a woman's life can be chaotic, but hormones after giving birth can be horrendous. Even before you had this little baby, do you think your fears and extreme anxiety could've been down to a severe hormone imbalance? You have other children, so this could have played a bigger part than you imagine. ..some women end up really ill after giving birth and all because of hormones, or lack of them to be exact.
You have young children, the youngest being only 6 weeks old....you must be exhausted in mind and body. Fighting health fears adds to that, giving you a feeling of hopelessness. The clue for me is that you say you've been doing really well, seemingly until you recently gave birth. This sounds like classic post natal depression.
I have only ever been a member of nmp and no other forum, and only know about Anxiety Zone through the people now on this forum. I can well understand their frustration to be honest as we also suffer Trolls on nmp too, and it really hurts genuine anxiety sufferers when they realise that some of the people they have been trying to help are just playing games. Ive heard tell of Stroud, and think that because of him people are understandably very wary.
But I don't know you, other than reading what you say in this thread and my opinion for what it's worth, is that you need someone to check your oestrogen /progesterone balance. That would be a start I think. It doesn't sound like much I know, but you'd be surprised at how much other things can fall into place if these hormones, as well as testosterone and thyroid levels are behaving themselves.
Take care x
ISB
Oh, and by the way, you really are not suffering from ALS. So that should be a weight off your mind.
Hi I still believe
Thank you for your post. Yes this seems to be a pattern with me in the post natal period. My baby is now 4 months. When I went into hospital with her she was a few weeks old. I went in because I had stopped eating and drinking as I felt phobic over swallowing issues. It's a post natal ward for mental health. It was the right thing for me at the time.
But with each of my other two children I had the same. I seem to get it under control about the year mark, although I have stopped breastfeeding earlier this time so hopin gym hormones regulate quicker.
I've had all the checks for hormones and thyroid etc. The neurologist said he believes this is definitely post natal anxiety.
I can imagine it must be horrible tonne supporting people then find they are trolls and if I'm 100% honest I think I'm very naive to believe these people exist. I promise I am. It a troll just a very anxiety ridden mum to 3 kids trying to get myself well to get back to myself.
My children are not aware of my anxiety as are most people unaware. I tend to meltdown on ethe kids are in bed and I can speak to my husband one to one.
Thanks you again xxx
---------- Post added at 19:43 ---------- Previous post was at 19:36 ----------
Keep in mind the way you so staunchly defend your irrationality. No matter what is said, you have a reason to continue despite anything anyone says, medically or otherwise.
Take that to heart because it's preventing you from healing.
Positive thoughts
I know his Fish I am just really really struggling. I am functioning much better. Every day I have plans so that I can try to distract myself.believe me I am
Not just laying down to this.every morning I wake up and the symptoms are there and I push through it.
I am waiting to start a cbt course next so I am
Waiting to hear about that.
This is why my name was hamsterswheel
On AZ because I felt when I was in a fear I would just spend my life going round and round on the hamster wheel! I'm trying to 'step off'. I am just so scared these symptoms are not nothing sinister but I am trying so hard everyday to tell myself it's anxiety.
---------- Post added at 19:46 ---------- Previous post was at 19:43 ----------
Does your psychologist know you're posting on an anxiety forum? I ask because the reassurance seeking would be highly discouraged. They should know as it can hinder your recovery.
Positive thoughts
No. I am not seeing her any more as she is going on maternity leave so I have been referred to start cbt next.
I know that I will need to come off the board, stop checking and stop seeking reassurance and medical tests. I have recovered before and his is what I did. It was so hard.
If you look back at my posting history on here it was 2013 and this is when I was postnatal with my son. Then I had a period of recovery before coming back this time around.
LE,
Let's get something clear. No one said you were a troll. What was said that your posting pattern resembled someone on AZ that was. That's all. It's very apparent you're struggling severely.
And sadly, yes, there are those that go onto all kinds of sites and mess with people. I even saw it on the cancer forums I was part of. To me, that's a sickness that goes beyond any documented physical or mental illness (although that behavior may indeed be some form of mental illness in itself).
I wanted to hopefully make you aware of something you said about your children not being aware of your anxiety. My ex suffered from depression. Long story short, our kids picked up on it as well as the marital problems and it was a HUGH eye opener when they did. Children are way more intuitive than we realize. You may think you're hiding your anxiety from them but I can assure you based on my experience, they pick up that something is up with their Mom.
I'm glad to hear you're in therapy and working toward healing. You didn't answer my question from an earlier post. Does your therapist know you're reassurance seeking on an anxiety forum? As I said, most would discourage it.
Positive thoughts
I just want to throw it out there that I really do feel for you, OP. If you're actually sincere about how terrified you are (to the point where reality and fantasy are inseparable for you), that's a painful place to be at. The only reason we're probing you so much is because people with anxiety disorders, especially those with health anxiety, do not need reassurance. That's counter productive to recovery, as fish said. It seems cold, but personally, I never got anywhere with people babying me. The reason I fight my demons so hard is because I can't just sit down and cry, I won't get the response I'm looking for from the people in my life and doctors.
I know deep down you realize you're extremely anxious and it's causing a lot of your symptoms. The als fear is especially strange because it causes some of us to go through a sort of body dyorphic disorder that could remain or is just present during the fear. I never went through that particular stage but MANY people have and convinced themselves that their bodies looked abnormal, atrophied, dented, slimmer, smaller, shrunken, you name it. So they kick it up a knotch and carry around a tape measure everywhere they go so they can check their arms or legs, or they stare into a mirror for hours looking at their tongues.
This fear is incessant, and if you ask any health anxiety sufferer that has been through it, it's the hardest fear to break DESPITE the disease actually being really obvious even in the early stages. There's many people just like you that we've typed up responses for and they just can't seem to let it go because they've read story after story online and scared themselves into a state of complete illusion. Their reality begins to fall apart, and their emotions become facts. Reason flies out the door.
Once again, we've all been there at some point or another. I'd be lying if I said the stray thought didn't still cross my mind. But the difference today is im on correct medication to manage my OCD which helps in the health anxiety department as well, and I can rationalize those thoughts if they stay for too long (which typically, they just come and go).
Once again, if you're really this afraid and you're being genuine, you might want to rethink what you're doing. Maybe you need to be on different medication, it's hard to find the right one sometimes. As another user suggested, maybe your hormones are imbalanced. A lot of mothers seem to lose it when faced with morbid thoughts about death and losing the ability to care for their children. Maybe you need a new therapist, one who doesn't coddle would be preferable to people like us.
Just some suggestions. I don't want you to think we're just evil people trying to push you to the ground. The reason people are still replying is because they're frustrated and they want you to get better. No one on these boards wants someone to fail. So fight your demons, tell anxiety that it cannot control your life like this, and work on it. It's not easy, that's why so many of us just sit around and let our minds take us on sick joy rides. But it's worth it to get this beast under control so you can go back to enjoying your children and your life.
Thanks Hancock this really means a lot to hear. I wish I was having a laugh about living this but I am not. I'm worried 24/7 even though on the outside I appear 'normal'.
Every time I speak I am very aware of every word I say thinking its doesn't sound like I normally sound etc etc. It's constant.
I know you are right about the reassurance. I had to stop seeking it to get better before and it's like a drug, the more reassurance the less effect it has. When thing sgettoo much I've posted here because I genuinely want all this crap to be just anxiety and my body manifesting symptoms and me misinterpreting 'normal' functions too.
Things definitely flare up when I'm post natal.needless to say I am having no more children!!!!
Thank you.
---------- Post added at 20:18 ---------- Previous post was at 19:57 ----------
LE,
Let's get something clear. No one said you were a troll. What was said that your posting pattern resembled someone on AZ that was. That's all. It's very apparent you're struggling severely.
And sadly, yes, there are those that go onto all kinds of sites and mess with people. I even saw it on the cancer forums I was part of. To me, that's a sickness that goes beyond any documented physical or mental illness (although that behavior may indeed be some form of mental illness in itself).
I wanted to hopefully make you aware of something you said about your children not being aware of your anxiety. My ex suffered from depression. Long story short, our kids picked up on it as well as the marital problems and it was a HUGH eye opener when they did. Children are way more intuitive than we realize. You may think you're hiding your anxiety from them but I can assure you based on my experience, they pick up that something is up with their Mom.
I'm glad to hear you're in therapy and working toward healing. You didn't answer my question from an earlier post. Does your therapist know you're reassurance seeking on an anxiety forum? As I said, most would discourage it.
Positive thoughts
Thanks Fish
I replied to the bit about posting on another reply was just trying to make sure I didn't miss any.
I know what you mean and yes that is true about kids picking up on stuff. That's why I am trying to get well for my children as I am a very present mummy normally and yes the anxiety makes me pre-occupied. My youngest are 3 and the baby but my 8 year old I try to protect too. What I mean is they do not see or hear me talking about symptoms or crying etc. This is done when they are in bed or away overnight with grandparents etc. But I do know that they will pick up I'm not 'usual' mummy.
I don't lay about the house or bed going poor me and talking about ailments etc. I still do all the things I always did for them and with them but yes my mind is pre-occupied.
I am trying hard to fight.
---------- Post added at 20:34 ---------- Previous post was at 20:18 ----------
Just to update:
This all started from me having eye issues and failing a visual field test at opticians. I went to hospital where I was referred for a brain MRI, neurologist and opthamologist. The way it all worked out I had the MRI first and it was clear. Then as you all know I've seen the neurologist several times and had the emg. So today was the opthamologist. He checked my eyes and said everything was normal. He said that many people fail a visual field test and often it is people who have high anxiety. Anyway he said that had I saw him first and his findings normal he would have referred me for an MRI and to neurology but he could see I had had all of this doneand all clear. He also said he knows of the neurologist reputation and basically said today that his advice would be for me to have no more tests done as everything has already been done. He said if I was his wife etc he would be happy with everything that had been checked. He was great actually and we talked about the anxiety.
So basically today concluded all of the tests that were referred for me and I guess from here I just have to keep telling myself it's the anxiety that's playing tricks on me. This is the hard but eh?!x
Thanks again x
Man, you got all clears from a team of docs that sound fantastic. Be glad and let go of this anxiety!
Not sure what made you believe the eyes are affected in ALS, but they are not. You are fine. Go live life. I wasted almost a year on this crap.
Capercrohnj
01-02-17, 15:22
Wow you are lucky to have great doctors. I am jealous! I have been waiting for a long time for an urgent but elective surgery. Wish I could get in with a specialist that fast and have necessary tests, etc.
If you absolutely can't shake your fears, ask for an EMG to be done! That is pretty much the gold standard for testing. It can be used to rule out diseases like ALS with almost no error.
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