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Re: Update On My Situation - Just Had EMG
Its very kind of you to reach out Murphy, the irony is that you are reassuring someone who should (after so many years , on this forum and another previously, of symptoms coming and going, twitching coming and going and so many terminal illnesses that were nothing) be at the point of reassuring you!
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Re: Update On My Situation - Just Had EMG
But he won't of course because the attention needs to be on him.
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Re: Update On My Situation - Just Had EMG
Unfortunately, I think that on some level he enjoys the drama.
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Re: Update On My Situation - Just Had EMG
The more I see this type of behavior, and it's especially evident with serial posters, it truly comes across like an addiction. Like the addict, they don't care where the next fix comes from and often hurt those close to them as well as others. They have no vision outside themselves and will do whatever they have to do to get their fix.
Positive thoughts
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Re: Update On My Situation - Just Had EMG
Quote:
Originally Posted by
Carys
Its very kind of you to reach out Murphy, the irony is that you are reassuring someone who should (after so many years , on this forum and another previously, of symptoms coming and going, twitching coming and going and so many terminal illnesses that were nothing) be at the point of reassuring you!
Thanks Carys, I know how lonely this can make you feel sometimes I feel like I’m that annoying poster lol ! Constantly seeking re assurance, I’m still down the rabbit hole but hopefully digging my way out of it thanks to you guys :)
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Re: Update On My Situation - Just Had EMG
Thanks for the kind words, Murphy
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Re: Update On My Situation - Just Had EMG
Well now the muscle that controls my thumb has started twitching too. So, now my index finger on right hand, thumb on right hand, and middle finger on left hand are twitching on and off. This is MND. There is NO reason this would be happening if there was not something wrong with me. I also am getting pain in my fingers in addition to the leg / shin soreness.
I actually am starting to believe I have ALS even though I have had a clean EMG or even Parkinsons. I am 33 years old. My other doctor had a family emergency over the holiday so they had to reschedule my appointment with him for next week.
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Re: Update On My Situation - Just Had EMG
I guess you need to get treatment for MND then. :doh:
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Re: Update On My Situation - Just Had EMG
If it's MND we really don't need these updates either, Darkside. They're only triggering to others, seeing that you're the exception to every rule.
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Re: Update On My Situation - Just Had EMG
Okey Dokey MND, despite everyone medical professional (and non-medical professional with life experience) saying it isn't AND a clean EMG. That seems likely. Off you go then......carry on chasing....
YOU HAVE HAD MND/ALS a few times before remember ! Seriously, and I mean this really seriously, are you just being dumb. Sorry to put it like that but nothing else gets through - at what point do you think 'oh I've had this before and it wasn't MND 4 years ago' 'nor was it MND two years ago' etc ???
I hope one day a medical professional, hopefully your PCP, sees your problem for what it is and puts a stop to this charade.
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Re: Update On My Situation - Just Had EMG
Quote:
Originally Posted by
Carys
I hope one day a medical professional, hopefully your PCP, sees your problem for what it is and puts a stop to this charade.
For a long time I've regarding doctors like this to be nothing more than Del Boy as far as their ethics go. They know there is nothing wrong with him, they know what is actually wrong with him, they will just continue milking his insurance for a new Merc. :lac:
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Re: Update On My Situation - Just Had EMG
I would imagine Health Anxiety is Big Business in the US-highly lucrative for the doctors who seize the opportunity to line their pockets whilst pandering to the worried well who are never satisfied with a clean bill of health.
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Re: Update On My Situation - Just Had EMG
It's big business for the pharmaceutical companies. Have you guys been here? When you watch TV, especially around dinner time on the major networks, there are commercials for medicines.
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Re: Update On My Situation - Just Had EMG
Wow, commercials for medicines- like major medicines and not just cough mix and paracetamol ? LOL
Quote:
They know there is nothing wrong with him, they know what is actually wrong with him
It sure is looking that way......
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Re: Update On My Situation - Just Had EMG
Yeah, big medicines. Here are some examples you can watch on YouTube:
https://www.youtube.com/watch?v=6GEOB9aplh0
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Re: Update On My Situation - Just Had EMG
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Re: Update On My Situation - Just Had EMG
The side effects alone would scare me off! ~lol~ Imagine life with a lower A1C reading and the risk of severe side effects!
Positive thoughts
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Re: Update On My Situation - Just Had EMG
My dog went in for a bad leg over Christmas (now healed up) and they did a blood test because it had been some time since he had one. They now recommend some liver support to reduce his enzymes. £90 a month. Guess what? The contents can be bought for far less than this and made up yourself. A 1 minute look via Google revealed I could buy the exact same supplement for £40 a month.
And that's because of insurance companies in my eyes. Vets milk your insurance company knowing you will never realise what's going on and your premiums rise slightly compared to the huge over inflation of private health care charges. We've had this before when they wanted to keep charging up £29 for some eye drops and the specialist we who they referred us too sad don't bother as it's little more than what is available on the supermarket shelf so buy it yourself and don't go through your insurance. It now costs us £4 a tube as opposed to the £29 the vet wants to charge.
US docs know they aren't charging you, they charge the insurance for most. How many people think about their premiums rising and how much of that us due to over prescribing, over testing and higher than needed profit margins? Isn't this why Trump wants to forge new trade agreements including clauses to overcharge all the foreigners for the same meds so as to subsidise them to those within the US? But the real question should be why that is? Drug manufacturing can't be that expensive and especially with mental health meds where nothing seems to have moved on for decades when you think about antidepressants.
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Re: Update On My Situation - Just Had EMG
Well, I've just discovered my left hand is actually atrophied on the back. The muscle on the back side of my hand between my thumb and index finger... it's a large bulge when I squeeze my thumb to my index finger on my right hand. However, on my left hand it's a much smaller prominence. Like literally 1/2 the size of my right hand. I am right handed, but I would not expect to see such a large difference between those muscles. My left hand is the one that has had most of the twitching. My left index finger is still twitching today... which, surprise, the twitch is coming from this muscle that I think is atrophied. I can see the twitch fire and it kinda makes my finger move side to side a bit.
This is a very depressing development in my story and honestly does confirm to me I have ALS. I had an unusual presentation at the beginning but now it's starting to look like more of a normal case... Atrophy, twitching, etc.
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Re: Update On My Situation - Just Had EMG
You keep telling us you have MND/ALS whatever but do nothing about it.
We really don't need to know to be honest. Just go and get treatment as I keep sayng.
This is an anxiety site which you don't have apparently so why bother posting here with updates?
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Re: Update On My Situation - Just Had EMG
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Re: Update On My Situation - Just Had EMG
Gosh that proves all those doctors wrong doesn't it, all those PCPs and neurological specialists including the one who gave you the RECENT clear EMG, everyone on here and everyone in real life. You had at least three false starts on the ALS over the years, at least 3 times you were convinced you had it with all the associated symptoms and many threads where you told us about your conviction, but to think this time you surely must be right. You've diagnosed your own muscle atrophy, well done, and to think that nobody believed you! Im not surprised you are so upset about it - I mean it was only the last day of October when you started this relatively cheerful and realistic thread and posted the words below and 2 months later you have atrophied muscles, that is so quick a progression.
Quote:
Today I had the NCV + EMG and both were totally normal. The neurologist said I do not have anything like ALS and ALS is very obvious on an EMG.
Well, do pop back and let us know how your treatment is going for ALS some time, and how your care package is going of course and how you are getting on with the assistive technology and progression of the illness.
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Re: Update On My Situation - Just Had EMG
Aw, Carys, don't be mean? His dearest wish just came true!
NB: I will happily show some compassion towards this user when he displays one single instance of it towards others.
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Re: Update On My Situation - Just Had EMG
Everything comes to those who wait for their diagnosis...And at long last you have one even if it's self-confirmed.
No need to see any other doctor now after all the tests and procedures you have been through.
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Re: Update On My Situation - Just Had EMG
Quote:
Originally Posted by
darkside4k
Well, I've just discovered my left hand is actually atrophied on the back. The muscle on the back side of my hand between my thumb and index finger... it's a large bulge when I squeeze my thumb to my index finger on my right hand. However, on my left hand it's a much smaller prominence. Like literally 1/2 the size of my right hand. I am right handed, but I would not expect to see such a large difference between those muscles. My left hand is the one that has had most of the twitching. My left index finger is still twitching today... which, surprise, the twitch is coming from this muscle that I think is atrophied. I can see the twitch fire and it kinda makes my finger move side to side a bit.
This is a very depressing development in my story and honestly does confirm to me I have ALS. I had an unusual presentation at the beginning but now it's starting to look like more of a normal case... Atrophy, twitching, etc.
Hi Darkside
It seems like you are in a bad bad place at the moment and I wanted to reach out because I am struggling big time with the same worry.
I am a year down the line and still sick with worry - it’s taken over my life and I have never felt so worthless at this moment in time
However you have had a clean emg there is nothing much clearer than that.
Can you still use this hand ? If so you are fine
I think we need to get into our heads what this disease actually is , we are also getting advice from members with first hand experience of this disease who are being totally selfless in providing re assurance ( which I will be forever grateful for )
Perhaps speaking to your doctor about these thoughts? I have an appointment Thursday morning and I am going to admit defeat .
I don’t want to spend another year checking my body - strength testing etc it is mentally exhausting! And I bet you don’t either!
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Re: Update On My Situation - Just Had EMG
Quote:
Originally Posted by
Murphy93
Hi Darkside
It seems like you are in a bad bad place at the moment and I wanted to reach out because I am struggling big time with the same worry.
I am a year down the line and still sick with worry - it’s taken over my life and I have never felt so worthless at this moment in time
However you have had a clean emg there is nothing much clearer than that.
Can you still use this hand ? If so you are fine
I think we need to get into our heads what this disease actually is , we are also getting advice from members with first hand experience of this disease who are being totally selfless in providing re assurance ( which I will be forever grateful for )
Perhaps speaking to your doctor about these thoughts? I have an appointment Thursday morning and I am going to admit defeat .
I don’t want to spend another year checking my body - strength testing etc it is mentally exhausting! And I bet you don’t either!
This is the big difference, you are willing to entertain this not being what your fear is telling you. You are willing to accept the possibility you need treatment for your mental health. Darkside won't even think about it. He has tried meds in the past and gave up very quickly due to side effects and forgot all about that fleeting moment where he must have accepted he had a mental health problem.
This stands you in good stead, you are over the first big hurdle in HA. The next is getting working on it and you are about to start that.
Sadly, Darkside is a prime example of why private medical care can be bad. His GP must be incompetent beyond words to not have realised this is about anxiety within a visit or two. The only other possibility is he/she is happy to file the insurance claims and buy the next new Merc.
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Re: Update On My Situation - Just Had EMG
Quote:
Originally Posted by
Murphy93
Hi Darkside
It seems like you are in a bad bad place at the moment and I wanted to reach out because I am struggling big time with the same worry.
I am a year down the line and still sick with worry - it’s taken over my life and I have never felt so worthless at this moment in time
However you have had a clean emg there is nothing much clearer than that.
Can you still use this hand ? If so you are fine
I think we need to get into our heads what this disease actually is , we are also getting advice from members with first hand experience of this disease who are being totally selfless in providing re assurance ( which I will be forever grateful for )
Perhaps speaking to your doctor about these thoughts? I have an appointment Thursday morning and I am going to admit defeat .
I don’t want to spend another year checking my body - strength testing etc it is mentally exhausting! And I bet you don’t either!
Thanks for the kind words. I just am truly in a dark place after discovering my first dorsal interosseous muscle on my left hand is smaller than my right. Actually quite a bit smaller to be honest. That combined with the twitching in that muscle is confirming ALS in my mind. I have atrophy. I have the twitching to match it. I really thought I was over the ALS hump after my clean EMG in my right shin. My right shin has been the most consistently sore and stiff over the last 4 months of any muscle in my body.
But, this hand thing is concerning. I've been twitching in that finger off and on for weeks and the twitches are right in that muscle that looks atrophied. Everything seems to match up with ALS. First atrophy. Then, twitching, etc.
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Re: Update On My Situation - Just Had EMG
Thanks for the supportive words Terry I have never felt so low than what I have done with this stupid fear but I am determined not to let it defeat me. Even if I have to go on meds my life would be a hell of a lot better than how I am living it now.
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Re: Update On My Situation - Just Had EMG
Quote:
Originally Posted by
Murphy93
Thanks for the supportive words Terry I have never felt so low than what I have done with this stupid fear but I am determined not to let it defeat me. Even if I have to go on meds my life would be a hell of a lot better than how I am living it now.
It's whatever it takes and however long it takes, gaining the rest if your life back is what is most important. People here will support you through it Murphy. Meds can take the edge off so you can start moving forward tackling the demons through therapeutic methods when before it seemed impossible so there is no reason not to ask for a little extra support to get you there.
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Re: Update On My Situation - Just Had EMG
Oh I hope so it’s so nice to hear things like that I life myself I find this fear consumes me at night very much so
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Re: Update On My Situation - Just Had EMG
I'm trying to think through this... here are some notes I wrote to myself...
_Was the burning legs on September 6th, 2019 my first sign of ALS? If so, why was EMG of legs normal even when they EMG’d my most symptomatic leg and after I had had symptoms for two months? If my legs were already being affected by ALS, why are they not weak still today after four months? I could definitely go outside and run a mile right now._
_If that was not the first sign of ALS then I must conclude the finger twitching is, leading me to the conclusion that the legs burning set me on a fear of ALS, which I didn’t have at the time, but then just months later I really did develop ALS which manifested in my fingers?_
_*If I answer that the legs were part of the ALS, I am left with no answer for why they are not weak, which is the hallmark of ALS. If I answer that they were not part of the ALS, I am left to conclude that I coincidentally really did develop ALS just months after I began fearing it, which seems absurd.*_
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Re: Update On My Situation - Just Had EMG
If you changed your attitude people would be more sympathetic to you.
Don't state you have cancer or MND/ALS and it can't be anything else possible ever ever ever.
That is what winds people up as you have not even considered other things.
Be a bit more thankful as well. You ignore most people on here and ALL advice.
If you can't make these changes then we will be closing your threads again.
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Now Having Bulbar Symptoms
So I started fearing ALS 6.5 months ago. Started with sore legs and hands. That is mainly gone. In December I had twitching fingers which has also subsided quite a bit. I'm not having any major muscular problems at the moment.
Until 3 days ago. I had not gotten much sleep and I felt very out of it. I noticed my tongue felt "awkward" and like it was harder for me to speak, although I wasn't really slurring any words or anything. I started hyper focusing on it - saying sentences out loud, etc. Yesterday I had more of the same thing. Even a tingling / tickling feeling on the tip of my tongue like maybe some very small twitching? Also have felt that in the back of my throat.
Today it continues. I tried to record a video of myself talking and actually did mess up a few words and had to restart and try again. I'm SO depressed. I thought I was about to get over this and now here I am with bulbar symptoms. I'm 33 years old.
I JUST saw a neurologist last Monday (9 days ago) who just did a clinical exam with some strength tests that were all fine. He also checked all my reflexes which were fine. At the time I wasn't fearing any of these bulbar symptoms or feeling like I was having more trouble speaking so I didn't bring it up. Now my next follow up is in six months.
I mentioned it to my wife and she says I sound normal but I know something is different in my mouth. It's like my tongue isn't working quite as fluidly as it did before.
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Re: Now Having Bulbar Symptoms
Please don't go back there darkside - you do not have it at all.
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Re: Now Having Bulbar Symptoms
I know. I really don't want to. It's so crazy. I'm not having any significant muscular problems right now. No soreness. No stiffness. No fatigue. Nothing. Good grip strength. So, like am I to make of this? Were my muscular symptoms actually ALS but now they feel a bit better but now it's progressed to Bulbar? That doesn't seem to make much sense. Were my muscular symptoms totally unrelated but now I JUST HAPPENED to get Bulbar ALS coincidentally. That also sounds pretty crazy.
I was just *so* tired on Monday I think from all the COVID-19 stress going around and not sleeping well that even my brain was just not firing on all cylinders. Wasn't thinking super clearly. I don't know if that was contributing to my speech but once I felt like I was having trouble I started hyper focusing and now I can hardly say any sentence at all without like mentally analyzing every word as I go, which of course makes it even harder to speak since I'm trying to speak and analyze my speech at the same time.
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Re: Now Having Bulbar Symptoms
Darkside, you're just half-crazy from stress like the rest of us. Don't sweat it.
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Re: Update On My Situation - Just Had EMG
Hi
This is just a courtesy reply to let you know that your thread was merged with another of your threads.
Please when posting on similar topics add it onto your previous post rather than starting a new one.
It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.
Elen