View Full Version : Update On My Situation - Just Had EMG
darkside4k
30-10-19, 20:24
Hey Everyone,
I wanted to come back and give everyone an update on my health situation. Some of you may remember by very long thread a while back that started about lymph nodes and ended up on ALS a full year later. A brief recap, my symptoms were / are:
- Muscle pain in various muscles throughout body, but primarily in my right shin.
- A feeling of muscle fatigue where my muscles wear out more easily.
- Twitching in various places. Sometimes focused in one place for a week at a time or more.
This has been going on about 7 weeks. I went to PCP which sent me to Rheumatologist, which referred me to Neurologist for an NCV + EMG test in order to rule out any nerve problems.
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.
I just wanted to provide that follow-up because I know I appreciate when someone has similar symptoms as me and posts an update that everything turned out fine. I don't know where I'll be going from here as I think the Rheumatologist may still want to pursue some other things - but, ALS, which was my main fear, is apparently out of the question based on the EMG results.
Hey Everyone,
I wanted to come back and give everyone an update on my health situation. Some of you may remember by very long thread a while back that started about lymph nodes and ended up on ALS a full year later. A brief recap, my symptoms were / are:
- Muscle pain in various muscles throughout body, but primarily in my right shin.
- A feeling of muscle fatigue where my muscles wear out more easily.
- Twitching in various places. Sometimes focused in one place for a week at a time or more.
This has been going on about 7 weeks. I went to PCP which sent me to Rheumatologist, which referred me to Neurologist for an NCV + EMG test in order to rule out any nerve problems.
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.
I just wanted to provide that follow-up because I know I appreciate when someone has similar symptoms as me and posts an update that everything turned out fine. I don't know where I'll be going from here as I think the Rheumatologist may still want to pursue some other things - but, ALS, which was my main fear, is apparently out of the question based on the EMG results.
Dark side that is fantastic news I’m so chuffed for you you must be so relieved ! I am currently suffering exact same as you - 10 months of it to be exact - unfortunately don’t seem to qualify for getting an emg . It’s really comforting to know that these symptoms don’t mean that dreaded illness !
darkside4k
02-11-19, 16:20
I can already feel myself slipping back into health anxiety. Wondering why I do have shin muscle soreness in my right leg. Maybe I have some other very serious disease or even cancer. Maybe MS. Maybe some sort of cancer. Maybe some sort of debilitating muscular disease. Heck, maybe even ALS even though I’ve had a clean EMG - although I do still accept that is unlikely.
I have to admit I still have strange muscle soreness in my legs, particularly my right shin.
I don’t want to go back to this dark place.
I have to accept that death is always a possibility at any time. I think that is the root of hypochondria. Scared of dying and leaving people behind. Scared of your family members being sad after you’re gone, etc. Scared for my kids to not have a Dad.
But, I need to accept that that is always a possibility. How many kids lost their dads just this week? Thousands? Someone dies in the US every 12 seconds. Multiple people have died since I started writing this post just in my country alone.
You're sounding really rational right now, Darkside. Try to hold onto that?
I think that is the root of hypochondria. Scared of dying and leaving people behind. Scared of your family members being sad after you’re gone, etc.
I agree with this Darkside, my HA (which incidentally I've not had now for decades) certainly came from what my doctor referred to as a fear of dying.
Now, you know its going to be said....so give us our moment :winks:....we all said there was nothing going on AGAIN. Cos lets be honest here, you swing from this serious illness, to the next and the next and the next year after year. We all said time and time again that there was no ALS and that your symptoms had absolutely nothing to do with it. It is my opinion, (and I've said this to another member who recently had an EMG with a 'normal' result) that it should never have even got to the point of having an EMG. I am pleased when I hear of them being refused, as if there are no concerns at all from nerve/neuro tests and nothing in presentation that leads a consultant to think its necessary, then it shouldn't be done. I don't want those who haven't been offered an EMG to think that this means they are missing out on their defining moment of ruling out ALS/MND, there are plenty of other signs and symptoms that doctors would be alert to and if they had any concerns you'd have been offered the EMG. Trust in medical professionals needs to start much earlier than after having had a major scan/test.
It is good that you updated though, as you are right people do deserve to hear the outcome after replying to you for so long.
darkside4k
02-11-19, 20:32
And yet I find myself still fearing I have ALS because I can’t tap my right foot (leg with fatigue sore shin muscle) nearly as fast as my right. Sigh. Maybe I have early ALS and the EMG missed that or not quite the right muscles.
Maybe I have early ALS and the EMG missed that or not quite the right muscles.
Well, that major reassurance lasted a shorter time than I expected. :shrug:
This is the lesson to learn from this thread ladies and gents, not that Darkside feared ALS for ages (despite being told he didn't have it etc) and had a clear EMG. That is no surprise. The lesson is that no matter what tests and reassurance is given there is always the 'what if....' Unless the faulty thought processes related to anxiety are dealt with, there is always the 'but....' and doubting, and moving onto the next illness.
nomorepanic
02-11-19, 20:49
We all knew this would happen.
Darkside - GET SOME HELP for the HA
Dying_Swan
02-11-19, 21:16
Glad you're ok Darkside, as we all thought you would be. Thank you for taking the time to let us know, and as you say, hopefully it will help others. Now, instead of falling straight back down that rabbit hole, why not finally seek support for your health anxiety?
Well, that major reassurance lasted a shorter time than I expected. :shrug:
This is the lesson to learn from this thread ladies and gents, not that Darkside feared ALS for ages (despite being told he didn't have it etc) and had a clear EMG. That is no surprise. The lesson is that no matter what tests and reassurance is given there is always the 'what if....' Unless the faulty thought processes related to anxiety are dealt with, there is always the 'but....' and doubting, and moving onto the next illness.
Another....Flogging a Dead Horse,Carys:)
MyNameIsTerry
05-11-19, 01:40
Hey Everyone,
I wanted to come back and give everyone an update on my health situation. Some of you may remember by very long thread a while back that started about lymph nodes and ended up on ALS a full year later. A brief recap, my symptoms were / are:
- Muscle pain in various muscles throughout body, but primarily in my right shin.
- A feeling of muscle fatigue where my muscles wear out more easily.
- Twitching in various places. Sometimes focused in one place for a week at a time or more.
This has been going on about 7 weeks. I went to PCP which sent me to Rheumatologist, which referred me to Neurologist for an NCV + EMG test in order to rule out any nerve problems.
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.
I just wanted to provide that follow-up because I know I appreciate when someone has similar symptoms as me and posts an update that everything turned out fine. I don't know where I'll be going from here as I think the Rheumatologist may still want to pursue some other things - but, ALS, which was my main fear, is apparently out of the question based on the EMG results.
I can already feel myself slipping back into health anxiety. Wondering why I do have shin muscle soreness in my right leg. Maybe I have some other very serious disease or even cancer. Maybe MS. Maybe some sort of cancer. Maybe some sort of debilitating muscular disease. Heck, maybe even ALS even though I’ve had a clean EMG - although I do still accept that is unlikely.
I have to admit I still have strange muscle soreness in my legs, particularly my right shin.
I don’t want to go back to this dark place.
I have to accept that death is always a possibility at any time. I think that is the root of hypochondria. Scared of dying and leaving people behind. Scared of your family members being sad after you’re gone, etc. Scared for my kids to not have a Dad.
But, I need to accept that that is always a possibility. How many kids lost their dads just this week? Thousands? Someone dies in the US every 12 seconds. Multiple people have died since I started writing this post just in my country alone.
Darkside,
What we see here is something we just haven't been seeing throughout your post history on NMP. There is a rational side there that knows they are just fears and they are not grounded in reality.
When you are not posting here, in a spiral, is this the other you? Can you recognise this rational side as you have done here? Doesn't this show the problem is in your mind because why would you be certain during the spiral but know it's nonsense the rest of the time? Do you believe the rational you outside of the spirals is ignoring something dangerous or do you just accept it was how you felt then and not how you feel now?
darkside4k
06-11-19, 14:58
I'm wondering if maybe I have thyroid cancer? Maybe that could cause my symptoms?
MS is also a possibility. I really don't know what else could be causing my symptoms. They do not seem to be anxiety related as they have not gone away following my clean EMG.
I'm wondering if maybe I have thyroid cancer? Maybe that could cause my symptoms?
MS is also a possibility. I really don't know what else could be causing my symptoms. They do not seem to be anxiety related as they have not gone away following my clean EMG.
Look back on your threads on here (think back to those on AZ also) have you learnt anything ?
darkside4k
07-11-19, 01:47
Honestly my symptoms today were worse than they have been in weeks. Quite severe pains in my legs, ankles, calves, etc. All over my legs basically. Mainly in my lower legs. Both legs involved. I don't understand it at all. I do think *something* is actually going on with me even though it may not be ALS. I do think I could have something serious just because my symptoms have been going on so long and are quite severe.
At this point things running through my mind are brain tumor causing nerve pains... thyroid cancer... some sort of rare muscular disease similar to ALS (?)... some sort of muscular dystrophy?
This truly is just so sad to see :weep:
FMP
MyNameIsTerry
07-11-19, 02:38
Hey Everyone,
I wanted to come back and give everyone an update on my health situation. Some of you may remember by very long thread a while back that started about lymph nodes and ended up on ALS a full year later. A brief recap, my symptoms were / are:
- Muscle pain in various muscles throughout body, but primarily in my right shin.
- A feeling of muscle fatigue where my muscles wear out more easily.
- Twitching in various places. Sometimes focused in one place for a week at a time or more.
This has been going on about 7 weeks. I went to PCP which sent me to Rheumatologist, which referred me to Neurologist for an NCV + EMG test in order to rule out any nerve problems.
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.
I just wanted to provide that follow-up because I know I appreciate when someone has similar symptoms as me and posts an update that everything turned out fine. I don't know where I'll be going from here as I think the Rheumatologist may still want to pursue some other things - but, ALS, which was my main fear, is apparently out of the question based on the EMG results.
I can already feel myself slipping back into health anxiety. Wondering why I do have shin muscle soreness in my right leg. Maybe I have some other very serious disease or even cancer. Maybe MS. Maybe some sort of cancer. Maybe some sort of debilitating muscular disease. Heck, maybe even ALS even though I’ve had a clean EMG - although I do still accept that is unlikely.
I have to admit I still have strange muscle soreness in my legs, particularly my right shin.
I don’t want to go back to this dark place.
I have to accept that death is always a possibility at any time. I think that is the root of hypochondria. Scared of dying and leaving people behind. Scared of your family members being sad after you’re gone, etc. Scared for my kids to not have a Dad.
But, I need to accept that that is always a possibility. How many kids lost their dads just this week? Thousands? Someone dies in the US every 12 seconds. Multiple people have died since I started writing this post just in my country alone.
^ Remember that guy? Wasn't he right?
darkside4k
09-11-19, 21:52
I go back to the Rheum Dr on Monday to discuss next steps after the clean EMG. This week my symptoms have been flared up again like they were at the beginning of all this. Pain and sore muscles in both legs. Twitching all over both legs. Waves of nerve like pain in both legs and sometimes in hands.
There is definitely something wrong with me as should be obvious to anyone but I don’t know what is going on. I hope we can get some information soon and figure it out. I would like to at least rule out MS. I also fear cancer and my muscular symptoms being paraneoplasm syndrome. I haven’t had any other symptoms that scream “cancer” though.
Could also be muscular dystrophy. I have no idea. But, something is going on.
nomorepanic
09-11-19, 21:54
Yeah something is going on - anxiety.
MS would be ruled out by the EMG
darkside4k
10-11-19, 19:37
Anxiety has absolutely nothing to do with my muscles being in constant pain in my legs. Nothing. Even that suggestion is somewhat insulting that this is all somehow in my head or caused by me being nervous.
There is something wrong with me. MS, muscular dystrophy, something. Just because we don’t know what it is yet doesn’t mean it’s anxiety.
Then, with all due respect, why are you posting on an anxiety forum?
If you're posting here because you think anxiety could be a cause, then don't get butt-hurt at the people that suggest that anxiety can be the cause.
Anxiety has absolutely nothing to do with my muscles being in constant pain in my legs. Nothing. Even that suggestion is somewhat insulting that this is all somehow in my head or caused by me being nervous.
There is something wrong with me. MS, muscular dystrophy, something. Just because we don’t know what it is yet doesn’t mean it’s anxiety.
If they haven't found a physical cause, though, wouldn't it be logical to consider other options?
Anxious brains CANNOT be trusted, and you'll almost certainly start feeling better once you accept this.
Insulting ?
Given your posting history Darkside, all the terminal illnesses you've never had all these years and all the tests that have found nothing..... I'm astonished you can claim being insulted by what is the given fact that this is anxiety.
I see that you still have learnt nothing from your recent clear EMG, along with all the other tests, scans and medical appointments over years. I don't think you have any intention of accepting your problem is one in the realms of mental health (although, indeed, why ARE you posting on this forum ?)
nomorepanic
10-11-19, 21:35
Insulting? really?
darkside4k
10-11-19, 22:49
Insulting ?
Given your posting history Darkside, all the terminal illnesses you've never had all these years and all the tests that have found nothing..... I'm astonished you can claim being insulted by what is the given fact that this is anxiety.
I see that you still have learnt nothing from your recent clear EMG, along with all the other tests, scans and medical appointments over years. I don't think you have any intention of accepting your problem is one in the realms of mental health (although, indeed, why ARE you posting on this forum ?)
I just get scared and don't know where else to post really. There is something wrong with me that is not caused by anxiety. No doctor at any time has suggested this is an anxiety related thing I'm experiencing. An EMG does not rule out MS, contrary to what someone else posted.
In fact, I'm not even particularly "anxious" about having MS. If I have it I have it. I just want to know *what* I have. It's been two months now and I feel no closer to knowing that, other than potentially crossing ALS off the list with the clean EMG.
See, this is why Hypo27 is not darkside. Darkside posts in complete sentences and uses correct grammar...and when s/he replies at least s/he acknowledges what you say, even if s/he doesn't believe you :roflmao:
MyNameIsTerry
10-11-19, 23:56
I just get scared and don't know where else to post really. There is something wrong with me that is not caused by anxiety. No doctor at any time has suggested this is an anxiety related thing I'm experiencing. An EMG does not rule out MS, contrary to what someone else posted.
In fact, I'm not even particularly "anxious" about having MS. If I have it I have it. I just want to know *what* I have. It's been two months now and I feel no closer to knowing that, other than potentially crossing ALS off the list with the clean EMG.
Yes you hate the feelings and the uncertainty. But once you get the reassurance it never truly goes away does it?
No one is saying your symptoms aren't real but you have to remember that anxiety isn't just having strange thoughts and feeling scared. Anxiety impacts all over your body and many of your organs. It's a chemical reaction just as we are chemical beings. That's not insulting, it's medically proven fact.
darkside4k
11-11-19, 02:22
Yes you hate the feelings and the uncertainty. But once you get the reassurance it never truly goes away does it?
No one is saying your symptoms aren't real but you have to remember that anxiety isn't just having strange thoughts and feeling scared. Anxiety impacts all over your body and many of your organs. It's a chemical reaction just as we are chemical beings. That's not insulting, it's medically proven fact.
Well, I think I don't have total reassurance because there is such a broad spectrum of things that could cause this. ALS, MS, Muscular Dystrophy, Thyroid, Brain (?), Hormone, Auto-Immune... and the *only* thing I think I have *maybe* crossed of that list is ALS (through EMG) and various forms of arthritis (through blood tests). So, I just worry because there is a whole list of bad things this could still be that we haven't tested for at all.
LOL at Vee, yeah, they are both such different people in posting style and thought processes actually, no idea why some say they aren't. Frustratingly Darkside also has times of being so close to breaking through this HA stuff.
Just a belief you have symptoms can cause symptoms, forget being 'particularly anxious' - if you think you have something you can actually create the symptoms. They are real and not imaginary.
Anyway, lets explore this bit....
No doctor at any time has suggested this is an anxiety related thing I'm experiencing. THis refers to the last 2 months 'illness' only I believe. So, what about the previous many years, what has your doctor said then ?
chinesewall
11-11-19, 10:57
Darkside, when I was well down the rabbit hole a few years ago (I only make the occasional visit now) someone pointed out how much I prioritised my HA - above my kids, my partner and my job in terms of the energy I devoted to it. Their question was how I thought it benefitted me. Was I displacing? Was it magical thinking/OCD related? etc etc. Thinking about the answer changed my understanding. Your history on here is one of HA and catastrophic thinking. That does not mean there is nothing physical the matter this time. But it does mean that regardless of that I reckon you could do with some help with approaching your mindset in a different way. Some people swear by CBT. I found existential psychotherapy most illuminating for my issues. Whatever might work for you would also be hugely useful if somewhere down the line you did have a real health issue. Worth thinking about anyhow....
darkside4k
16-11-19, 15:26
Sadly my muscle pains and twitches have continued and are causing me quite a bit of problems. The Rheumatologist has referred me to a local hospital for a muscle biopsy to determine if I have any muscular dystrophies, mainly Becker's Dystrophy as they already did some blood tests on some other forms of dystrophy.
He says if this comes back normal there isn't much else he can do on his end but he thinks it is a good idea to get this biopsy based on my symptoms. I'm pretty bummed, as I was hoping after my clean EMG the symptoms would go away if they were anxiety based but I don't really think they are anxiety. They are too constant and consistent and too painful.
If this muscle biopsy comes back normal I will still have some worries about MS being a possible cause, but I will have to talk to my primary care doctor about that.
Lately the hotspots have been behind my knees and in my calves. Behind my right knee is sore pretty much 24 hours a day. Then I get pains all up and down my legs and last a few seconds and go away, then come back a few minutes later, etc.
And how did you become aware of "Becker's Dystrophy"?
You're lucky to be able to afford all these (unnecessary) tests but I totally disagree that anxiety can't cause your symptoms. And the rest... :lac:
Yeah, you keep on searching Darkside, one day...one day...something will appear ey.
darkside4k
16-11-19, 18:43
The doctor mentioned Beckers. I had never heard of it.
The doctor mentioned Beckers. I had never heard of it.
But I'm sure you've researched it thoroughly now.
You can still cling on to the MS diagnosis if miraculously this latest biopsy comes back clear.
muscle pains and twitches have continued
Oh look, your very first thread on this site almost exactly three years ago - December 2016. You complain about twitching, fatigue, tightness, muscle pains in your hands, fingers, arms, thighs and calves, sounds like the same 'illness' you have now Darkside. So, you've come a full circle in the last three years, with a large number of terminal illnesses in between of course, but now you are back to the same thing you started with. Go back and read it - learn something for once ! Oh don't tell me - this time is different ? I honestly can't believe your doctor is indulging you like this.
https://www.nomorepanic.co.uk/showthread.php?192302-Worried-I-Have-ALS-Arm-Fatigue
(https://www.nomorepanic.co.uk/showthread.php?192302-Worried-I-Have-ALS-Arm-Fatigue)
I think it's a question of the patient needing to have a sense of getting his/her money's worth from the consultation? The more tests the better and more "thorough" the consultation, thinks the patient.
MyNameIsTerry
16-11-19, 20:43
And how did you become aware of "Becker's Dystrophy"? I think I tried a pint of that once! http://yoursmiles.org/tsmile/drink/t0321.gif (http://yoursmiles.org/t-drink.php)
Nice little emoticon you found there Terry lol You are right it does have the sound of an ale lol
Pulisa - yeah you are probably right. I was thinking though of Darkside's GP/PCP, who seems to give referrals willynilly.
I find it interesting Darkside, that you keep repeating the word 'SYMPTOMS' , the definition being - a physical or mental feature which is regarded as indicating a condition of disease. What you have aren't symptoms, you should stop using the word which validates your belief that you have some illness to uncover. What you have are sensations and feelings.
I think I tried a pint of that once! http://yoursmiles.org/tsmile/drink/t0321.gif (http://yoursmiles.org/t-drink.php)
No wonder you had the "shakes" :ohmy:
MyNameIsTerry
17-11-19, 02:28
No wonder you had the "shakes" :ohmy:
https://media.giphy.com/media/bzSWoFLMKgo00/giphy.gif
darkside4k
23-11-19, 21:26
Hey everyone,
Just another update. My muscle biopsy is still scheduled for about a week and a half away. I'm still having muscle, ligament, and nerve pain in my legs and sometimes in my hands. Unfortunately, there hasn't been much improvement in my situation - leading me to believe there is something actually wrong with me and it is not just anxiety / muscle tension. I'm honestly not positive the muscle biopsy will show anything, which also makes me depressed since the Rheumatologist basically said he isn't sure what else to do after this test. But, I feel like there is a lot of other stuff to do - we could check my thyroid, we could check for Lymes Disease, we could check for MS. So, I feel frustrated that if this biopsy doesn't show anything I'll basically have to go to another doctor to keep pursuing this because I don't want to live in this pain forever.
Has anyone ever experienced anything like this and had it actually go away? It's been 2.5 months now of dealing with constant muscle pain and tightness in my legs.
Has anyone ever experienced anything like this and had it actually go away?
I know someone who experienced this, YOU - a few years ago. You had this exactly, and it went away as evidenced in your threads.
darkside4k
23-11-19, 23:15
That was not anywhere near as severe as this. These symptoms are different and more severely painful. In addition they have lasted multiple months. Ibuprofen does not help the pain at all.
My legs are in near constant pain and have twitching often. I don’t know what’s going on. It’s not anything imagined and too severe to be “anxiety”. I seriously hope I survive this whatever it is but I’m doubtful that I will.
If the pain is so "severe" and intolerable, get your GP to prescribe Oxycontin or MST :lac:
NEXT!
MyNameIsTerry
24-11-19, 02:31
Has anyone suffered continual pain in the body for more than a couple of months? Yep, billions of people. Got many it's just part of getting old.
Muscular tension can afect you for years. Bad backs can affect you for years. It's not like you are getting any treatment, mental or physical, and are too busy searching out your diagnosis to try anything practical which might help. So, if you sit with any condition doing nothing about it why would you expect magic to solve it? Of course you will say this is because you need to get your MS, ALS, tumour or cancer diagnosis first but the reality is most people would be looking for ways to ease their symptoms and trying new things out rather than chasing doctors who can't find anything.
I know I'm wasting my breath here, but Darkside, you need to find something that fascinates you more than your own (imagined) impending doom.
So you're aching - so what? I ache all the time and I bet a lot of others here do too. It's an annoyance, but the vast majority of the time it's not even in my top 10 things to think about.
darkside4k
25-11-19, 21:50
I went to a place near here where you can simply pay for any lab tests you need done without needing to go to a Doctor, etc. They do things like STD screening but also any random tests like CBC, Thyroid, etc. I paid to have my TSH thyroid hormone screened as well as Lyme Disease testing. I should have the results from these tests in a few days. I just wanted to rule these two things out myself so I can cross two more things off the list of possibilities.
If both of these come back negative I guess I will have no choice but to go forward with the muscle biopsy the doctor recommended even though it makes me nervous and I would honestly rather be screened for MS first since it's not anything invasive.
nomorepanic
25-11-19, 21:58
Why not try treating the anxiety - that could be a miracle cure.
OOOorrrrrr, you could look back at your threads and see you've had this before and it went......
Why not try treating the anxiety - that could be a miracle cure.
That’s not what he wants Nic-poor darkside likes living his life like this and constantly seeking assurances :winks:
darkside4k
26-11-19, 13:08
The muscle fatigue has spread to my neck now. My entire neck is burning with muscle fatigue like it is so tired. My legs as well. My life is over. I also read that muscle fatigue can be an early sign of ALS before weakness so maybe I really do have ALS and my EMG was just before my weakness started. I've had the muscle fatigue for almost three months now but haven't had any weakness yet.
Something is seriously wrong with me.
That’s not what he wants Nic-poor darkside likes living his life like this and constantly seeking assurances :winks:
Doesn't he just...
darkside4k
26-11-19, 15:47
Just got TSH and Lyme's test back (that was fast). TSH was 2.8 so within reference range. Lyme was negative. So, it's not either of those two things it seems. I was hoping it would be something obvious and treatable like that.
So, it looks like I'll have go ahead with the biopsy and accept either ALS, MS, or muscular dystrophy. My neck is *burning* with muscle fatigue still today.
So, it's not either of those two things it seems.
What a surprise !
So, it looks like I'll have go ahead with the biopsy and accept either ALS, MS, or muscular dystrophy.
Don't pin your hopes on it. Oh, and have you forgotten you had an EMG that ruled out ALS ?! (hence the name of this thread)
Besides, as I said earlier you've had ALS majorly three times before, the first time was before you joined us prior to 2016, the second time was when you joined us in Dec 2016. Actually you've had it a few more times since then, apart from the present bout of ALS.
brucealmighty
26-11-19, 20:09
darkside, there is a member called toby2000 who has very similar issues to yourself but with his bias towards stomach and rectal cancers, it may be worth having a look through the IBS threads area because it may save you a lot of questions that have already been answered
it looks like you have extreme health anxiety like a lot of people on here, and that can be sorted out believe me, because I was in the grips of it myself for many years
I`ll leave it there but with a bit of work and belief on your part you can get better, it will all depend whether you want to be defined by your fears, or your hopes
Bruce haven't you met Darkside before ? Darkside is our long-time resident serial multiple thread poster. He is catastrophic about everything and has a cancer of some sort every other week, even a broken fingernail is from cancer. We have tried for years (3 here and quite a few on Anxiety Zone) to give positive advice, but he still won't believe he has HA and does nothing to challenge his throughts. There has been a lot of effort applied to try and help but he is consistently searching for another illness (this is his third time of chasing an ALS diagnosis). Its a terrible shame, but until he wants to do something about it.......and he seems not to.....your advice will fall on deaf ears.....:shrug:
brucealmighty
26-11-19, 20:51
Ah, cheers Carys that's saved me a lot of wasted effort. Much appreciated. Not met darkside before and not got enough in the tank for it to be honest.
Thanks for the heads up, take care
No worries. It was kind of you to try.
darkside4k
11-12-19, 19:12
Hey everyone - I thought I would come back and provide another update for anyone following this thread.
As suggested by the Rheumatologist, I had the muscle biopsy last week. On Monday (two days ago) I went for the follow-up and to get the results. The biopsy did not show any signs of muscular dystrophy or any other pathological disease. However, the doctor called the pathologist because the pathologist noted some non-specific changes in the muscles. The pathologist (who apparently is pretty pro at muscle biopsy readings) said they didn't see any signs of "disease" but that some things looked like I may have a CPTII deficiency, which is a muscle enzyme deficiency and is basically a birth defect. Basically your body has trouble converting fatty acids for your muscles - or can't do it at all. The pathologist thought this was a "possibility" but did not see signs of anything else going on.
So, that's basically it. I have no more tests scheduled at this time and just follow up with the Rheumatologist in four months so they can do some bloodwork and monitor my CK levels to see if they see any muscle breakdown.
So, they have basically ruled out muscular dystrophy. I have had a normal EMG to check for other nerve related issues like ALS or whatever else that can detect. I have had various bloodwork done to check for various things. I have had my thyroid levels checked. I have had a Lyme disease test performed.
I still have muscle pains in my legs that I did not use to have so I do still believe there is *something* wrong with me but at this point going forward I'm not sure what else there is to do. I think if my symptoms progress or I start seeing new symptoms I will definitely press my primary care doctor to investigate something like MS but I don't think he would really want to do that right now and I would feel stupid pressing for it at this point because I've already gone through so many tests.
I may have a full thyroid panel done by a local lab. I only had my TSH checked which was 2.8 and within range, but it was 0.8 higher than it was about 2 years ago when I had it checked for something else unrelated.
I guess my main fear is I have some serious disease that we are just not finding. Obviously it doesn't get much more serious than ALS and we *seem* to have ruled that out with the EMG and also just the fact that I have still (after 3 months of this) never actually had any clinical weakness where my muscles can't do something or I can't grab something, etc. I can still walk on toes and on heels. I can still squat down and back up. I can still do all of my normal life stuff my leg muscles just feel tired and achey. I take a vitamin every day. I dunno what else to do.
Part of me still fears ALS but I know I just don't have very many classic signs of that (at least not yet). I think MS is something worth at least checking since it can be done with a non-invasive MRI but personally I will probably just wait and see if symptoms progress or change before trying to get that done.
Of course there are also other sorta less professionally recognized disorders like Fibromyalgia or BFS that could be considered but I don't think any of my doctors really deal or even recognize those issues very much.
I'm sure that if you have enough tests you will eventually get diagnosed with an incidentaloma or two but I expect you will concentrate on the "CPTII deficiency" and pathologise that into something sinister.
nomorepanic
11-12-19, 23:40
Are you going to treat the HA now you have a clean bill of health?
I'm sure that if you have enough tests you will eventually get diagnosed with an incidentaloma or two but I expect you will concentrate on the "CPTII deficiency" and pathologise that into something sinister.
:yesyes:
I read your account and found it tragic, quite pathetic, Darkside, your absolute belief that you have physical illness and year on year on year you have nothing found. What a waste of a life.
I believe you are going to search your whole life, and be tested forever more, judging by the post you have put above. There is, yet again, nothing wrong with you....not a thing. The medics around you seem to indulge your HA constantly, so whilst that happens and nobody will put their foot down with you, this will continue indefinitely.....test after test after test (infact you even talk here of another thyroid test!)
darkside4k
14-12-19, 02:01
I'm still having a feeling of muscle tightness and fatigue even today in my right shin area. I wish they would have biopsied that area to be honest but I have also had pain at various times in the left thigh they did biopsy.
But, I don't know what else to do. I could go to another doctor and ask their opinion but I don't know if that's crazy or not. I don't want to just be a doctor chaser. Has anyone else ever dealt with persistent muscle tightness in the legs (both), muscle fatigue (no weakness), that lasted for months and did it eventually go away with no explanation?
Y'know, sometimes people just get aches and pains. They hang around for a while and then they go away.
And people who are worried they are dying all the time get a lot of ache and pains because they have so much tension from being worried...
I don't want to just be a doctor chaser.
I hate to break the news to you, the obvious news, that you already are - and have been for years.
darkside4k
20-12-19, 14:08
Ugh, muscles are very sore and stiff today particularly my right shin which has been the problem area from the beginning. I don't get it. I didn't work out or anything yesterday. It's so frustrating. I really think I may have to get a second opinion from another doctor.
To be honest I fear that ALS could not be ruled out because we tested early before I'm showing the full signs on EMG and that is why my EMG was clean.
I'm sure you will find a way to explain away your clean EMG and seek further opinions/get further tests because you are a doctor and diagnosis chaser.
To be honest I fear that ALS could not be ruled out because we tested early before I'm showing the full signs on EMG and that is why my EMG was clean.
Absolutely a doctor and diagnosis chaser ! AND as we've said before on here, many a time, one day it'll be true of course but you will have wasted your WHOLE LIFE.
darkside4k
28-12-19, 20:54
Sadly I had to make an appointment with another Primary Care doctor to get a second opinion. My appointment is next Thursday.
I'm continuing to have muscle pain and soreness and exercise intolerance in my legs, as well as pain in my hands. In addition, my left index finger has been twitching a lot and now also my right middle finger is twitching a lot too. The left index finger has been twitching on and off for a couple of weeks. My right middle finger started twitching maybe 5-6 days ago. Obviously this is pretty concerning for ALS even though I have had a clean EMG. I am mainly hoping this doctor will refer me for an MRI to check for MS because I do feel that is warranted given my symptoms and I am not just saying that as a hypochondriac -- if someone else told me they were having these symptoms I would definitely recommend they see a doctor and get it checked out. It's not normal and it's not benign or anxiety. I just believe it is impossible for anxiety to give you muscle pain and soreness in your legs and pain in your hands for almost 4 months straight.
I'm so bummed. I was hoping this would resolve on its own but it seems this is an actual medical problem that needs to be addressed. If it is MS I at least hope it is the relapsing form but I'm doubtful of that since my symptoms have been so consistent. I also still fear ALS and that I have a slowly presenting / oddly presenting form of it which did not show on my initial EMG but will show if I additional EMGs later on.
My symptoms are pretty different from anyone else's I've read about on here which makes me nervous.
nomorepanic
28-12-19, 20:59
Your symptoms sound like many other people on here.
Are you still not treating the anxiety?
there
is
nothing
wrong
with
you.....
Physically.
If you do get a physical diagnosis, will you finally start living your life?
darkside4k
29-12-19, 13:23
I don't understand how people can say there is nothing wrong with me when I have been in pain for 4 months. My legs are constantly tired. They are again this morning. I am in my early 30s. I am not elderly. My feet get pains. My toes get pains. My fingers hurt. My fingers twitch. My legs twitch. Every single day this is happening for the last 4 months. How can people believe there is nothing physically wrong with me? Can you point me to someone else on this forum who had the exact same situation and it was nothing?
I would feel better knowing what is causing this because at least I could start appropriate treatment if one is available.
I could point you to 1000 people who have posted on this forum who have had similar, yourself included for many years (as your thread history testifies to). I can't be bothered to find individual threads and people though as I think it'll make no difference even presenting you with a page of 'evidence'. Your big mistake is constantly searching for a physical reason - which time and time and time again is proved by the medical field to hold no validity. You never seem to make the jump to the fact that your anxiety levels and total belief in a physical illness can cause these symptoms. Twitching, pain, weakness - you've had it many times before along with the other terrible terminal illnesses you've been convinced of.
I would feel better knowing what is causing this because at least I could start appropriate treatment if one is available.
We all already know what is causing it and what the treatment is, it is you who never seems to be prepared to accept that.
nomorepanic
29-12-19, 15:12
Treat the anxiety as we keep saying :wall:
Hi Darkside
I am right there with you , I have been twitching for a year now but still no clinical weakness . I often get achy muscles too but genuinely have to start training my mind to logically believe this is anxiety causing these issues
I think we’re both going to be fine,
We just need to believe it!
I hope you are okay
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!
But he won't of course because the attention needs to be on him.
Unfortunately, I think that on some level he enjoys the drama.
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
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 :)
darkside4k
30-12-19, 13:07
Thanks for the kind words, Murphy
darkside4k
03-01-20, 16:45
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.
nomorepanic
03-01-20, 16:46
I guess you need to get treatment for MND then. :doh:
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.
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.
MyNameIsTerry
03-01-20, 22:44
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:
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.
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.
Wow, commercials for medicines- like major medicines and not just cough mix and paracetamol ? LOL
They know there is nothing wrong with him, they know what is actually wrong with him
It sure is looking that way......
Yeah, big medicines. Here are some examples you can watch on YouTube:
https://www.youtube.com/watch?v=6GEOB9aplh0
Here's another one that's on A LOT:
https://www.youtube.com/watch?v=R_gp8I-ZyZQ
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
MyNameIsTerry
05-01-20, 22:54
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.
darkside4k
06-01-20, 18:18
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.
nomorepanic
06-01-20, 18:22
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?
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.
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.
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.
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.
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!
MyNameIsTerry
06-01-20, 21:25
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.
darkside4k
06-01-20, 21:27
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.
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.
MyNameIsTerry
06-01-20, 21:47
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.
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
darkside4k
06-01-20, 22:57
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.*_
nomorepanic
06-01-20, 23:07
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.
darkside4k
18-03-20, 16:20
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.
nomorepanic
18-03-20, 17:41
Please don't go back there darkside - you do not have it at all.
darkside4k
18-03-20, 18:03
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.
Darkside, you're just half-crazy from stress like the rest of us. Don't sweat it.
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
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