Intense 24/7 muscular weakness and fatigue anyone ?

[Rossy191276]

So I have received my individual tests from my hospital stay in 2016 and the confusion and frustration just gets deeper.

I see the topic of autoantibodies being zero was discussed with Jonathon Edwards explaining that we have a small amount of autoantibodies to everything. My ACHR antibody rest for MG was .1 which was classed as negative but then I saw that the ranges were very different depending on Lab. My lab said that at .1 I should be retested in several months at my level (which no one ever told me). But in reading it seems the vast majority do record a zero on this test and in fact Mayo Clinic and another Lab I found considers anything over .02 a positive with corresponding clinical/neurological testing.

Then I looked at repetitive nerve testing results and I had anywhere from 1% to 8% decrement on the test. The comment was that there was a decremental pattern throughout test but no definite evidence of a problem and classed the test as normal.

I also have a failed Spirometry so find it hard to believe that none of this was ever mentioned and even with a follow up stay where they were focused on my dysautonomia MG was never mentioned and these test results weren’t even in the report!

I have so many severe symptoms that I find it hard to believe that MG explains me but given that it seems if I was at Mayo Clinic I would be probably get an MG diagnosis maybe it is part of my problem. I will start a mestinon trial from my GP and he is hopeful that this might give more chance for IVIG to be tried.

 

[Gingergrrl]

So I have received my individual tests from my hospital stay in 2016 and the confusion and frustration just gets deeper.

Hi Rossy, I am glad that you got your tests back but sorry that they have added to the confusion (which I really relate to)!

My ACHR antibody rest for MG was .1 which was classed as negative but then I saw that the ranges were very different depending on Lab. My lab said that at .1 I should be retested in several months at my level (which no one ever told me). But in reading it seems the vast majority do record a zero on this test and in fact Mayo Clinic and another Lab I found considers anything over .02 a positive with corresponding clinical/neurological testing.

I would trust the Mayo interpretation of results over a random lab. I disagree with Mayo re: treatments and do not endorse them. But their lab is phenomenal, especially with more obscure autoantibody testing. If they said that anything over .02 is a positive, I would personally go with their interpretation.

I also have a failed Spirometry so find it hard to believe that none of this was ever mentioned and even with a follow up stay where they were focused on my dysautonomia MG was never mentioned and these test results weren’t even in the report!

I can relate to this as well and failed 4-5 spirometry tests over the course of several years and watched my diaphragm and lung muscles weaken until I did IVIG. Neuros preferred to focus on my dysautonomia over the autoantibodies (if they even focused on that)! My EMG report showed an abnormality which was never mentioned to me until I got a copy of the report for myself and showed it to my main doctor who took it seriously.

I have so many severe symptoms that I find it hard to believe that MG explains me but given that it seems if I was at Mayo Clinic I would be probably get an MG diagnosis maybe it is part of my problem. I will start a mestinon trial from my GP and he is hopeful that this might give more chance for IVIG to be tried.

I agree that MG probably does not explain everything vs. that you might have a combination of different issues like I do. I did not do well with Mestinon (but I am also negative for the MG autoantibody). Please keep me posted how your Mestinon trial goes and I am so hoping that you will be allowed to try IVIG.

 

[Rossy191276]

Hi Rossy, I am glad that you got your tests back but sorry that they have added to the confusion (which I really relate to)! I would trust the Mayo interpretation of results over a random lab. I disagree with Mayo re: treatments and do not endorse them. But their lab is phenomenal, especially with more obscure autoantibody testing. If they said that anything over .02 is a positive, I would personally go with their interpretation.

I can relate to this as well and failed 4-5 spirometry tests over the course of several years and watched my diaphragm and lung muscles weaken until I did IVIG. Neuros preferred to focus on my dysautonomia over the autoantibodies (if they even focused on that)! My EMG report showed an abnormality which was never mentioned to me until I got a copy of the report for myself and showed it to my main doctor who took it seriously.

I agree that MG probably does not explain everything vs. that you might have a combination of different issues like I do. I did not do well with Mestinon (but I am also negative for the MG autoantibody). Please keep me posted how your Mestinon trial goes and I am so hoping that you will be allowed to try IVIG.

Thank you @gingergirl. I spoke to another patient with similar symptoms to me and she said the New York- Presbyterian hospital where she is a patient would definately consider me positive given combo of results as well.

Do you remember what your abnormality on the EMG was?

That’s what my ME doctor said. He thought it’s possible that this could help explain why my muscle weakness and breathing strength is so bad and could be combining with ME or something else causing dysautonomia.

I have just started a quarter of a Mestinon a day and no major negative reaction like you had so that’s the first barrier. I am getting retested on achr and also my doctor was happy to do voltage calcium channel autobodies so that will be tested this week. And he said these results at least give him something to question the neuros with the power to try to get IVIG approved about so that is a small step.

Thanks for all your comments on this board @gingergirl I haven’t found help yet but reading your story motivated me to fight for all my tests to be released. Even if it doesn’t help it’s shown me not to let hospitals keep any records without release because there’s every chance they won’t follow them up or consider them in combination.

 

[Inara]

Just came across this thread, and it's pretty interesting for me.

I have moderate ME and it seems to me the muscular weakness and fatigue is too intense for what it should be. It’s also increased with time, slowly over the 3 years +

I'd say the same in my case. Fitness, muscles, nerves, pain...all this seems to get worse and worse, whereas cognitive function isn't. I, too, would like to be properly checked for mito issues or whatever...

On the other hand, I had to think about Ron Davis' talk in Los Angeles (or was it San Francisco?) where he said that if their findings are correct they might have found what's behind autoimmunity. Having this in mind, it could be possible to have an unknown autoimmune process that might lead to symptoms that remind of other autoimmune diseases (like myasthenia, Lambert Eaton, channelopathies, whatever...), but the "classical" tests are negative.

Edit:

A few weeks ago, I even had difficulty holding my head for 48 hours. My neck felt too weak to hold the weight of my head.

That's actually normal for me. I can't hold my head for long, I need to support it after a while.

edit 2:

Sometimes I feel like a zombie and my eyes are half shut. It’s always both eyes, not just one eye.

I have this regularly, too. Sometimes, when I'm bad and I have constant eyelid twitches (on one side), it feels as though the eyelid muscles weaken and I can only keep the lid open with effort.

 

[Inara]

That Neuro said my EMG was "perfect" with "no abnormalities" but when I finally got a copy of the results, it said that I had neuropathy to the left phrenic nerve (to diaphragm) and that it was only working at 57% vs. the right phrenic nerve was working at 93%.

Thank you so much @Gingergrrl for your post! You motivate me to demand my EMG and ENG test results from the neurological clinic (although I guess it didn't show something; I guess SFN is more probable).

 

[Gingergrrl]

Do you remember what your abnormality on the EMG was?

Rossy, I somehow missed your post back in April and the abnormality on my EMG (in 2016) was mono-neuropathy to the left phrenic nerve which showed it was only working at 57% at that time. The Neuro was very hesitant to release my test results (after telling me they were "perfect") and he got very defensive with me and my husband in an e-mail and said that he could not help me further. Which was fine b/c he was a jerk and I found someone else.

That’s what my ME doctor said. He thought it’s possible that this could help explain why my muscle weakness and breathing strength is so bad and could be combining with ME or something else causing dysautonomia.

I agree and I initially believed all the doctors who told me that I just had "CFS" (the American term for ME) and that there was nothing that could be done. But then one Cardio who I saw for a POTS consultation (in 2015) said that my muscle and breathing weakness exceeded anything he had ever seen in POTS. He said 100% that I had POTS but that I also had something else going on, that was outside of his scope, but it was more similar to muscular dystrophy, although of course it was not actually muscular dystrophy.

This motivated me immensely to keep searching. He was a nice man but was unable to help me b/c he felt I needed a Neuromuscular specialist. All the Neuros were useless and it was my ME/CFS doctor and MCAS doctors who mutually agreed that my core problem was autoimmune (b/c of positive ANA and eventually finding eleven autoantibodies).

They took a chance with me and now after almost 2 yrs of high dose IVIG, and nine months of Rituximab, I can walk 100% without wheelchair and drive my car for the first time since 2014. I would love to tell those former Neuros, who did not believe that I was really ill, to go f*ck themselves but there is no point and nothing will change their minds!

I have just started a quarter of a Mestinon a day and no major negative reaction like you had so that’s the first barrier.

How is it going with the Mestinon?

I am getting retested on achr and also my doctor was happy to do voltage calcium channel autobodies so that will be tested this week. And he said these results at least give him something to question the neuros with the power to try to get IVIG approved about so that is a small step.

Please forgive me if you have already told me, or posted it elsewhere, but have you gotten your results back yet (for the achr and VGCC autoantibodies)?

Thanks for all your comments on this board @gingergirl I haven’t found help yet but reading your story motivated me to fight for all my tests to be released. Even if it doesn’t help it’s shown me not to let hospitals keep any records without release because there’s every chance they won’t follow them up or consider them in combination.

I am so glad that I was helpful and YES you should absolutely get copies of your test results. They are invaluable IMO. In the US, the patient holds the legal rights to their medical records but I do not know about other countries.

On the other hand, I had to think about Ron Davis' talk in Los Angeles (or was it San Francisco?) where he said that if their findings are correct they might have found what's behind autoimmunity. Having this in mind, it could be possible to have an unknown autoimmune process that might lead to symptoms that remind of other autoimmune diseases (like myasthenia, Lambert Eaton, channelopathies, whatever...), but the "classical" tests are negative.

Ron Davis was in SF but I agree, it was fascinating what he said re: autoimmunity and posted about it in a thread on the other board.

Thank you so much @Gingergrrl for your post! You motivate me to demand my EMG and ENG test results from the neurological clinic (although I guess it didn't show something; I guess SFN is more probable).

Thank you @Inara and I often wonder if I am posting anything useful on this board (since I do not have classic ME/CFS) and you reassured me to keep sharing my story here. Please get a copy of your EMG and do not assume it is normal. The single fiber EMG is the gold standard test for LEMS (which I did not have and just had a regular EMG) but am not pursuing it since I am now basically in remission from the IVIG and Rituximab and that test would not change anything for me at present.

 

[Rossy191276]

Rossy, I somehow missed your post back in April and the abnormality on my EMG (in 2016) was mono-neuropathy to the left phrenic nerve which showed it was only working at 57% at that time. The Neuro was very hesitant to release my test results (after telling me they were "perfect") and he got very defensive with me and my husband in an e-mail and said that he could not help me further. Which was fine b/c he was a jerk and I found someone else.



I agree and I initially believed all the doctors who told me that I just had "CFS" (the American term for ME) and that there was nothing that could be done. But then one Cardio who I saw for a POTS consultation (in 2015) said that my muscle and breathing weakness exceeded anything he had ever seen in POTS. He said 100% that I had POTS but that I also had something else going on, that was outside of his scope, but it was more similar to muscular dystrophy, although of course it was not actually muscular dystrophy.

This motivated me immensely to keep searching. He was a nice man but was unable to help me b/c he felt I needed a Neuromuscular specialist. All the Neuros were useless and it was my ME/CFS doctor and MCAS doctors who mutually agreed that my core problem was autoimmune (b/c of positive ANA and eventually finding eleven autoantibodies).

They took a chance with me and now after almost 2 yrs of high dose IVIG, and nine months of Rituximab, I can walk 100% without wheelchair and drive my car for the first time since 2014. I would love to tell those former Neuros, who did not believe that I was really ill, to go f*ck themselves but there is no point and nothing will change their minds!



How is it going with the Mestinon?



Please forgive me if you have already told me, or posted it elsewhere, but have you gotten your results back yet (for the achr and VGCC autoantibodies)?

Hi @Gingergrrl

Sorry for my slow response I haven't been on for a while...My doctor had health issues so its taken a while to get things moving again. So far I have increased Mestinon to 1 tablet 3 times a day with no side effects but no noticeable difference. I also got results for my Achr tests and this time my doctor said they only reported them as negative without giving a score. I was able to send a neurologist my initial results and she said that the reason that different labs have such varying positive limits (e.g.., .4 on my initial test where I was .1 vs .02 at MAYO labs) is that they all do the assay differently. I don't feel too satisfied with this response and would like to get the test done at Mayo but don't see any way I can make this happen. I am still awaiting results on the Calcium channel antibodies after the testing company not contacting me about the fact I needed to pay for these tests...

I have made some general improvements over last few months and I am able to talk a little bit on most days again and actually got into reclining wheelchair for 1st time in over a year and my wife was able to wheel me into the back yard and saw the sky! But since these improvements began before I started mestinon while I can't discount it is helping in some general way my guess is that after having no major setbacks in 6 months I have just improved a little naturally.

Also one interesting thing I have discovered is that taking Clonazapem helps me to be able to take deeper breaths a few hrs after taking it and I think also to talk a little more. I have seen this effect mentioned on dysautonomia forums but no-one seems to know why including my doctor. I will post about this at PR site...

How are you doing?

 

[Rossy191276]

Hi @Gingergrrl

Sorry for my slow response I haven't been on for a while...My doctor had health issues so its taken a while to get things moving again. So far I have increased Mestinon to 1 tablet 3 times a day with no side effects but no noticeable difference. I also got results for my Achr tests and this time my doctor said they only reported them as negative without giving a score. I was able to send a neurologist my initial results and she said that the reason that different labs have such varying positive limits (e.g.., .4 on my initial test where I was .1 vs .02 at MAYO labs) is that they all do the assay differently. I don't feel too satisfied with this response and would like to get the test done at Mayo but don't see any way I can make this happen. I am still awaiting results on the Calcium channel antibodies after the testing company not contacting me about the fact I needed to pay for these tests...

I have made some general improvements over last few months and I am able to talk a little bit on most days again and actually got into reclining wheelchair for 1st time in over a year and my wife was able to wheel me into the back yard and saw the sky! But since these improvements began before I started mestinon while I can't discount it is helping in some general way my guess is that after having no major setbacks in 6 months I have just improved a little naturally.

Also one interesting thing I have discovered is that taking Clonazapem helps me to be able to take deeper breaths a few hrs after taking it and I think also to talk a little more. I have seen this effect mentioned on dysautonomia forums but no-one seems to know why including my doctor. I will post about this at PR site...

How are you doing?

 

[Gingergrrl]

Thank you for the update @Rossy191276 and I am happy to talk further in the future via PM (on the other board) or by e-mail if it would be helpful. I am so glad that you are pursuing this and not giving up! Congratulations on going out into the backyard with the wheelchair and seeing the sky! That is amazing and I wish you many more positive things to come...

 

[Inara]

I join in with @Gingergrrl.

I am happy for you @Rossy191276.