Intense 24/7 muscular weakness and fatigue anyone ?

[Dechi]

I know muscular weakness is common in ME patients but I sometimes wonder if there isn’t more to mine. I’m wondering if testing for myasthenia gravis should be done. I’ve had 2 negative EMG’s but I know you can still have MG even in that case.

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’ve had ME. Brushing my dog, washing my hair, pouring coffee or doing any repetitive movement for more than 5-15 seconds will start being excessive and leave me weak and almost shaking.

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.

Is anybody else in the same situation ? MG can affect lungs and sometimes, although rarely, cause respiratory crisis where people have to be put on respirators until they gain muscle strength. That’s a scary though !

 

[Diwi9]

@Dechi - I'm sorry you are going through this. I only have extreme muscle weakness intermittently, it can be bad when it sets in...especially in my arms. I don't know much about myasthenia gravis, but I have heard that there a multiple paths to the diagnosis...so that it's not always a clear case. Do you have ptosis (drooping eyelid)?

 

[Dechi]

@Dechi - I'm sorry you are going through this. I only have extreme muscle weakness intermittently, it can be bad when it sets in...especially in my arms. I don't know much about myasthenia gravis, but I have heard that there a multiple paths to the diagnosis...so that it's not always a clear case. Do you have ptosis (drooping eyelid)?

@Diwi9 Thank you. It’s not clear for me if I have ptosis or not. Sometimes I feel like a zombie and my eyes are half shut. It’s always both eyes, not just one eye.

I too have heard it’s not always easy to diagnose, but there is a simple blood test that is pretty accurate. It tests for acetylcholine I believe. I asked for it but my doc said no, that we would see in 2 months if I still felt as weak. The test costs 150$ so I think that’s why they don’t want to do it too soon.

 

[Diwi9]

I get the sleepy eye situation too, it's like I can't open my eyes all the way for full expression...but it's always both eyes. Sometimes my muscle weakness can pop up at times when I'm feeling okay. I can especially have problems typing, texting, or holding a cup of tea. It's more than weakness, there is a coordination aspect as my muscles seem weak and twitchy. I know you take good care of yourself, but for what it's worth, the only thing I do at these times...whether placebo or not...is increase amino acids and electrolytes.

 

[adambeyoncelowe]

I get muscle weakness and I do have ptosis in my left eye. However, when they did the antibody test for acetylcholine, it was negative. This was before my ptosis, though.

I would say my muscle weakness is worse than my fatigue. But then, early accounts of ME stress 'muscle fatiguability' over fatigue, and PEM wasn't a term then. I wonder if muscle weakness is a more accurate term for some of us.

 

[Trish]

Hi @Dechi, I'm sorry you are having such a difficult time. I have no idea whether your symptoms could be something other than ME - I don't have enough knowledge of MG or any other muscle conditions, but if you are worried about a particular possible diagnosis, you should probably get tested if it's possible, if only to set your mind at rest.

I have had muscle fatiguability throughout my ME. I was pretty fit at the start, but straight away had a horrible feeling that after walking a short distance or standing for a few minutes, my legs were going to go from under me, and would get shaky and weak.

All my muscles are painful and rapidly fatiguable all the time, made worse by activity. After 28 years, my ME has worsened from mild to fairly severe and I inevitably have some deconditioning added to that, particularly in my legs, so the distance I can walk without needing to sit down urgently has shrunk from a hundred metres to under 10 metres.

I think it is muscle fatiguability rather than 'fatigue' that should be listed in ME descriptions, to distinguish it from tiredness. I am rarely tired, despite sleeping pretty badly, but I my muscles are always fatigued. (I was much more tired as a healthy mum years ago, being woken multiple times a night by crying babies!).

 

[Alvin]

The best advice i can give is get more tests done, but go to a specialist, even get a few opinions because several sets of eyes will have more experience then just one.

 

[Gingergrrl]

@Dechi, I know it may be impossible to get these tests in Canada but I would get tested for the Myasthenia Gravis and MuSK autoantibodies and the LEMS (calcium channel) autoantibodies. I knew that muscle and breathing weakness were a problem for me but I did not realize HOW big of a problem they were until they went away. I really did not have "fatigue" but I had muscle weakness that was constant and was progressively worsening until I started treatment for it.

 

[Ryan31337]

@Dechi,

Do you know if you have had a Single Fibre EMG? This is the test specific for MG, different from a regular EMG.

I understand from my neurologist that when SFEMG is negative in combination with negative antibody blood tests, you can be quite confident its not MG.

Ryan

 

[Rossy191276]

Hi @Dechi

I am similar in many ways...severe muscle weakness along with dysautonomia are my worst symptoms.

My worst was upper leg weakness which hit quickly and made it difficult to walk... I had remissions until last year where I went from being about to walk unlimited amounts within apartment to not being a able to walk 5 metres to bathroom within a week and I’ve been bedbound since.

I have severe chest muscle weakness which has stopped me talking most of time more than a few words at a time and makes breathing shallow at times.

My head is unaffected and my arms less affected though I have had two times when my arms were hit with severe weakness to point of being only able to type a maximum of 2 mins in a day but both times they recovered over a period of weeks.

My muscle biopsy on leg revealed severe type II atrophy and I’ve since found several people diagnosed with ME with the same findings.

I am currently trying to find out what antibody testing I’ve had and will try to get the MG testing done if I haven’t yet.

The other thing I would suggest if you haven’t yet is consider talking with a primary mitochondrial disease specialist. I have spoken to 2 and both said my combination of muscle weakness, dysautonomia, and migraine mean primary mito is a possibility and I am going to get gene testing done for that.

Good luck...

 

[Dechi]

@Dechi, I know it may be impossible to get these tests in Canada but I would get tested for the Myasthenia Gravis and MuSK autoantibodies and the LEMS (calcium channel) autoantibodies. I knew that muscle and breathing weakness were a problem for me but I did not realize HOW big of a problem they were until they went away. I really did not have "fatigue" but I had muscle weakness that was constant and was progressively worsening until I started treatment for it.

Do you have MG @Gingergrrl ? I’ll take a note of these tests for when I see my doctor. Thanks.

 

[Dechi]

@Dechi,

Do you know if you have had a Single Fibre EMG? This is the test specific for MG, different from a regular EMG.

I understand from my neurologist that when SFEMG is negative in combination with negative antibody blood tests, you can be quite confident its not MG.

Ryan

I don’t know and I can’t find a good description of the test online. I had one regular MG and the second one, the neuro had me contract my muscles during the test. Both were done in my forearm. I’ll keep in mind that both tests are best. Thanks !

 

[Dechi]

Hi @Dechi

The other thing I would suggest if you haven’t yet is consider talking with a primary mitochondrial disease specialist. I have spoken to 2 and both said my combination of muscle weakness, dysautonomia, and migraine mean primary mito is a possibility and I am going to get gene testing done for that.

Good luck...

I would love to see a mito specialist. But it seems noone is taking me seriously, or just don’t know how to get these tests done for me. I’ll talk to Dr Hyde and see if he can get me an appointment with a good neuro and mito specialist.

 

[unicorn7]

I have wondered the same thing often, about myasthenia gravis.

My worst symptom is muscular fatiguability (extreme weakness), but it is post-exertional. When I try to ignore and push through, I do become ill. Also, I don't have eye problems.
If I rest long enough, the strength seems to come back. When I was at my worst, I had a hard time lifting my tea-mug or getting up the stairs. I know the feeling that just keeping your head upright seems like a challenge for your neckmuscles I'm a lot better now, so I can do something on average every three days.

 

[Gingergrrl]

Do you know if you have had a Single Fibre EMG? This is the test specific for MG, different from a regular EMG.

Hi Ryan, I know you are asking Dechi, but wanted to also reply in case it is helpful. When I had an EMG (to rule out LEMS), the Neuro was not very nice and rushed me in and out and did a regular EMG and nerve conduction test. I did not have a Single Fiber EMG and was told it was not necessary but I later learned that the SFEMG is the Gold Standard test for LEMS (and I have the calcium autoantibody that correlates with LEMS). The main auto-antibody is the P/Q type, which I do not have, but the second one is the N-type, which I do have.

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%. This was maddening to me (and to my ME/CFS doctor) who ordered an additional test called the "Sniff Test" which is like a moving x-ray of the diaphragm while you stand and sniff/cough. I asked my main doctor if he knew of a good Neuromuscular specialist anywhere in Southern California and he said no! I think I will win the lottery or be struck by lightening before I find one (and have actually given up) b/c I was able to get the treatment needed in my case (high dose IVIG & Rituximab) without a Neuro.

I am similar in many ways...severe muscle weakness along with dysautonomia are my worst symptoms.

My worst was upper leg weakness

Hi Rossy, we are so similar (when we've compared notes on the other board) re: dysautonomia and muscle weakness except that I never had muscle weakness in my legs. For me, it was all in my upper body (arms, chest, neck, etc). At my worst my arms were too weak to open my front door or turn on the faucets in my shower. This is all gone now but I do not know if I will ever have the muscle strength that I did pre-illness and I do not know what happens when I stop these treatments in the future.

I am currently trying to find out what antibody testing I’ve had and will try to get the MG testing done if I haven’t yet.

I'd be very curious, too, once you find out!

Do you have MG @Gingergrrl ? I’ll take a note of these tests for when I see my doctor. Thanks.

I actually do not have MG and this was definitively ruled out. I had the MG and MuSK panels done by Mayo's Lab and was 100% negative. The one in question for me was LEMS but if I have it, it is some kind of atypical version b/c most most with it have the P/Q calcium autoantibody, have severe LEG weakness vs. arm weakness, test positive even on regular EMG, and improve with Mestinon which I could not tolerate at even 1/8th of a pill. Many take a med called "3,4 DAP" but if I could not even tolerate an 1/8th of a Mestinon, this would probably kill me (and was never recommended for me by any doctor). Also, many people with LEMS find that as they do an exertion/movement, their muscle strength improves vs. for me, it just continues to weaken.

So at this point, we know I have autoimmunity causing POTS and muscle weakness but we don't truly have a name for my condition. 90% of US doctors label me with "CFS" but my actual ME/CFS specialist, who is a God-send, now feels I have something different. He feels it is very similar but different.

I would love to see a mito specialist.

I would, too, but this was never recommended or approved for me and I gave up on this like I did with trying to find a Neuro. What types of tests would the Mito doctor do that would be helpful diagnostically? When you talk to Dr. Hyde, can you update me/us?

Best wishes @Dechi

 

[Ryan31337]

The other thing I would suggest if you haven’t yet is consider talking with a primary mitochondrial disease specialist. I have spoken to 2 and both said my combination of muscle weakness, dysautonomia, and migraine mean primary mito is a possibility and I am going to get gene testing done for that.

I've been promised this after a muscle biopsy next month 'if necessary' - by that I'm assuming there needs to be some abnormalities in the muscle sample (red ragged fibres?).

Its interesting that you bring up migraine, my myologist also felt that my tendency to severe migraine after trivial exertion was as strong an indicator for MM as any other symptom I had. I've also learnt that another of my symptoms, cyclic vomiting often associated with migraine, is quite a strong indicator depending on who you speak to. Its also more common in dysautonomia but who can say how many of those patients actually have undiagnosed MM...

I understand another strong indicator of mito disease is elevated serum lactate. Mine has been very significantly elevated after trivial exertion (walking, stairs etc.), though again it appears hard to say if this is just a result of dysautonomia driven oxygen delivery issues rather than oxygen extraction.

I don’t know and I can’t find a good description of the test online. I had one regular MG and the second one, the neuro had me contract my muscles during the test. Both were done in my forearm. I’ll keep in mind that both tests are best. Thanks !

Doesn't sound like SFEMG to me. I had very fine needle electrodes inserted above and below the eye, they then look for jitter in the resultant readings. Its a lot more subtle and wasn't painful at all.

 

[Gingergrrl]

Doesn't sound like SFEMG to me. I had very fine needle electrodes inserted above and below the eye, they then look for jitter in the resultant readings. Its a lot more subtle and wasn't painful at all.

Sorry if stupid question, but is a SFEMG always done above and below the eye or would it depend which body part they were testing? If they were trying to rule out LEMS or other autoimmune muscle illnesses, would they put very fine needles in different body parts (like arms or legs, etc)? Thanks in advance to anyone who knows!

 

[Ryan31337]

Yes, it can be performed elsewhere. I've heard reports of it being performed around the mouth, also seen some demonstrations of it on forearm. I guess the cheek/eye area makes it easier to locate a single fibre.

I don't know if the location performed on changes the sensitivity for different conditions, it is certainly sensitive for other diseases though.

 

[Rossy191276]

Hi Rossy, we are so similar (when we've compared notes on the other board) re: dysautonomia and muscle weakness except that I never had muscle weakness in my legs. For me, it was all in my upper body (arms, chest, neck, etc). At my worst my arms were too weak to open my front door or turn on the faucets in my shower. This is all gone now but I do not know if I will ever have the muscle strength that I did pre-illness and I do not know what happens when I stop these treatments in the future. I'd be very curious, too, once you find out!

Yes We have several similarities. After my last hospital stay the overseeing doctor proposed a trial of IVIG but he was overruled by the neurologist on the basis that I haven’t tested positive to any autoantibodies that is why I am trying to get details of which ones I have had. I will keep you updated @Gingergrrl . Regarding the MIto doctor they would likely suggest a combo of blood tests, muscle biopsy, and/ or gene testing...but in your case given you have improved on IVIG I think that might rule out genetic MITO

 

[Rossy191276]

I've been promised this after a muscle biopsy next month 'if necessary' - by that I'm assuming there needs to be some abnormalities in the muscle sample (red ragged fibres?).

Its interesting that you bring up migraine, my myologist also felt that my tendency to severe migraine after trivial exertion was as strong an indicator for MM as any other symptom I had. I've also learnt that another of my symptoms, cyclic vomiting often associated with migraine, is quite a strong indicator depending on who you speak to. Its also more common in dysautonomia but who can say how many of those patients actually have undiagnosed MM...

I understand another strong indicator of mito disease is elevated serum lactate. Mine has been very significantly elevated after trivial exertion (walking, stairs etc.), though again it appears hard to say if this is just a result of dysautonomia driven oxygen delivery issues rather than oxygen extraction.


Doesn't sound like SFEMG to me. I had very fine needle electrodes inserted above and below the eye, they then look for jitter in the resultant readings. Its a lot more subtle and wasn't painful at all.

@Ryan31337 i had no ragged red fibres or Cox findings on biopsy which are the 2 basic indicators of MM on biopsy but both doctors I talked to agreed this absolutely doesn’t rule out Mito myopathy. With biopsy they both recommended further enzyme testing of the sample but apparently that needed to be done at the time and I am not clear if positive findings on these indicators are specific to genetic MIto or simply indicate mito dysfunction that could be caused by ME factors not specific to mito failure...

Also both doctors I spoke to said they would advise the gene testing first as it can pick up 70% of genetic mito mutations through a blood test. So far from perfect as they say they estimate it still missed a % of cases as they are learning more about mito mutations all the time.

They also both agreed that dysautonomia is very common in genetic mito disease.

All the best