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MG and CFS (chronic fatigue syndrome)
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MG and CFS (chronic fatigue syndrome) 25 Feb 2011 10:24 #948346

  • bo01
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Hi Everyone,

Some years ago I was diagnosed with MG, although the neurologist always said there is something else but could not work it out.

Yesterday I had an appointment and now I have a new neurologist. We had a long chat and he said although the antibody test is positive the levels are low (19) he feels what I am going through is not all myasthenia, after doing some testing ie: eyes, moving arms etc, he said the myasthenia is mild and could be CFS (chronic fatigue syndrome) or it is also know as ME (myalgic encephalomyelitis).

I told him after doing anything energetic I get very weak and tired, for example if I do something energetic like attending this appointment I know for a fact the next day I will get very tired and depending on energy used I can sleep for a day, days or a week to recover. He said this is not normal for MG, as you should feel no energy straight away after doing anything energetic and not the day after.

He has suggested I have a EMG test and not to take anymore mestinon, I hope he is right as I thought the mestinon was helping especially when I have that horrible feeling when you come all over funny and cannot move, eyes are closed and cannot talk but I can hear, when this happens I take a mestinon and wait until it passes, he reckons also this is not MG.

The other things that happen to me is the choking with food and fluids not all the time but it does happen, and sometimes double vision. I get slurred speech and mixed up words which can be embarrassing, and sometimes termors. I also get tingling sensations daily in the arms and legs, he said - "why do you think this is MG it could be your diabetes", now I am really confused! I definately cannot walk very far as my body just ceases up,

So now I have to wait for an appointment to have this EMG test and not to take anymore mestinon.

Can anyone help on my question - my neurologist said I have mild MG and possible CFS hence the reason for the
EMG test. I am not entirely sure on his decision for me to give up the mestinon plus has anyone else been diagnosed with mild MG and CFS?

Thank you for your helpful advice.

Bo

RE: MG and CFS (chronic fatigue syndrome) 25 Feb 2011 15:21 #948387

  • alice
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Bo,

I have to admit that I am completely puzzled.

I read your post twice and I am still not sure I fully understand.

You have MG-like symptoms and antibodies, for a few years, and only receive treatment with mestinon?

Some of your symptoms are due to chronic fatigue (obviously, you describe chronic fatigue, but what does this mean?) some to diabetes ?could some of them be due to the place of the stars in the sky?

you mention improvement (even if not resolution) of your symptoms with mestinon, so the recommendation is to stop mestinon? and give no further treatment?

What am I missing?

RE: MG and CFS (chronic fatigue syndrome) 25 Feb 2011 16:18 #948394

  • Carol O'Connor
Hi Alice

I don't quite understand the post either. 8o

I thought it wasn't the number of the anti body count that was important - just that it was positive. I was informed by my neuro that a few antibodies could be very damaging/harmful/ and on the other hand a high antibody count didn't mean that you had MG worse because of this.

My anti body level was 129 (the other info relating to this I'm afraid went over my head at the time) and yes I was told it was high but the anti bodies themselves might not be strong ones.

Surely any positive antibody level would/should be treated in a similar fashion. Why and what good would it do to withdraw the mestinon?

Am I missing something or just being stupid? :wacko:

RE: MG and CFS (chronic fatigue syndrome) 25 Feb 2011 18:23 #948407

  • bo01
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Hi Alice,

Thanks for your reply, I think the best thing for me to do is to wait for my neurologist's letter to see what he is on about when he recommended I come off mestinon to have the EMG test. I don't know if he mean't now or before the test, I will ring his secretary on Monday.

The reason I am only on mestinon is because I am not allowed steroids due to my diabetes. I have been having this battle for years with the symptoms outlined in my post above, but now this new neurologist seems to think it could be the diabetes causing some of them. Talk about confused!

I did feel at the appointment he was trying to say in a round about way I have mild MG and he wants to have this test done for CFS, so is he thinking I do not have MG?

His last words as I walked out the door was... at least we can cross these off the list! what he mean't I do not know I am baffled too.

Oh well I just take each day and cope the best I can. I will wait for his letter and see what he has written and get this EMG test done.

I will let you know the outcome.

Bo

RE: MG and CFS (chronic fatigue syndrome) 28 Feb 2011 14:00 #953556

  • clairesy
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Hi Alice!!

A very interesting post.

I have been treated with mestinon for over a year now.
My new nuero has asked if he can treat me with a drug used for M.E.

However. My fatigue is easily treated with mestinon and rest.
With M.E, The weakness and fatigue is delayed at times.... My weakness and fatigue is pretty much instant.
I think you and I are in a similar boat.

I don't want to give up on mestinon, as it makes me feel much, much better.. Within an hour or so of taking it......(When I'm in a pickle and walking like a wonky lap dancer (I wiggle my hips when i walk, as they get so weak, its like a not very seductive bird of paradise dance gone badly wrong).... I'm fit enough to go shopping... Mmmm... With no wiggle.. Normal gait. All down to Mestinon.

OK... I think we need to think about this!!
Maybe coming Off mestinon will prove something for both of us?

Good luck x

RE: MG and CFS (chronic fatigue syndrome) 28 Feb 2011 16:00 #953607

Hi,

if anyone is being told they have ME or chronic fatigue syndrome please look at this website which will fully explain the disease - not syndrome of ME.

www.hfme.org/methemedicalfacts.htm

This site was created by a young lady called Jodie Bassett whose life has been decimated by ME. ME is not chronic fatigue syndrome they are two completely different entities. I am very passionate about this as my sister has suffered with ME for 20 years.

ME was declared a disease in its own right in 1969 by the world health authority calling it anything other than ME is an act as far as I can see by the medical profession in diminishing how terrible this disease can be. MS, MG, Cancer is not reffered to by a different name so why should this disease be any different? I will get off my high horse now! LOL

Like Cancer, MG and MS, ME can not be made better by cognitive behavioural therapy or by graded exercise regimes. Studies that say this is the case are based on poor methodology and the patients used as case studies have not under gone the diagnostic tests that the world health authority recommends for a diagnosis to be reached.

By reading the website you will educate yourselves regarding ME, in the fact it can be tested for and shouldn't be used as a diagnosis when a neurologist or any other Dr can not comprehend your condition.

If a Dr tells you have ME, unless they are a recognised expert, expect to be sent for mental health assessments, cognitive behavioural therapy and graded exercise. The graded exercise if you have ME will make you worse, CBT will leave you frustrated as you are sick and you aren't able to do the things suggested by the therapist.


The site is quite technical, but if this is the diagnosis that your dr is suggesting to you, you owe it to yourselves to have the information.

Sorry if this seems like a rant - I get very passionate about this.

Rach

RE: MG and CFS (chronic fatigue syndrome) 09 Mar 2011 10:17 #981717

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Hi Bo

I've picked up this thread a bit late as I've not been on the forum for a while, but yesterday I had a new neurologist appointment, where he said he thought I had Chronic Fatigue. However, He says it is fine to continue to take mestinon for it. I am also having another batch of tests.

It is normally recommended that you stop Mestinon for the EMG, but I am allowed to take it for my chronic fatigue symptoms, so I don't see that you should need to stop it if it helps.

diabetes can cause numbness of the hands and feet sometimes, but shouldn't cause chronic fatigue if it is well controlled.

I think it is the 'fashion' amongst neurologists to have a very tight idea of MG based on tests not the patient, and so the nature of the illness of MG is now taught very differently to the illness that was originally described.

For me the last 2 neurologists have talked about unexplained symptoms and chronic fatigue, (not chronic fatigue syndrome), and 3 neurologists have now said it's fine for me to use mestinon. (I'm doing the round of neurologists!)

Lynette

RE: MG and CFS (chronic fatigue syndrome) 09 Mar 2011 12:31 #981763

  • ragdoll
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Hi, I too have just read this, I'm not sure how I missed this earlier!! The title may have misled me..

I too understand that the number is irrelevant, if it is positive it confirms a diagnosis of MG, whether it is mild or severe ir irrelevant in any case. If mild MG is not treated appropriately then it has the potential to become worse.The reason the death rate for MG has improved so much in the past 40 years is because MG is diagnosed more quickly now, and therefore treated. Untreated MG is much more worrying. To withdraw treatment in the face of an existing diagnosis is IMO reckless and not in your best interests.

I think sometimes the language we use is not understood by our experts and can cause them confusion. Do you think he is saying you are cured and the positive result was wrong? I don't think so...

The symptoms you describe of not being able to talk or move and eyes closing are MG, I have experienced them enough to know that, obviously he has not!! as well as the choking and the slurred speech.

Which country are you in, I think he needs to speak to someone with MG or needs some guidance certainly!

RE: MG and CFS (chronic fatigue syndrome) 09 Mar 2011 14:07 #981789

  • bo01
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Hi Palo,

Thanks for your reply, I live in the UK and I have been battling with my health issues since 2006. I totally agree with everything you say.

You know when you leave an appointment and you think - "hang on a minute what did he say? that is not right etc" well this is how I felt after leaving this appointment.

He started the conversation with - "I want you to tell me exactly how you are feeling at this present time" I said "what today?" he said "yes today" he did not ask throughout the appointment how I have been coping this past year with my health ie: the choking on food and drink, the sudden onset of falling into a heap (the can't see, can't talk) and when it happens I cannot move at all, I just lay there until it passes, the breathing can become very shallow which is very scarey! and the choking thing well it's like you continuosly cough out and cannot get your breathe back in. This is why I am never alone, I always have someone around to pat my back hard and also to give me a mestinon when I have that horrible feeling of collapse. Plus like I say in my post above I get slurred speech, fuzzy tingling sensations in the hands and legs, heavy weak legs, double vision and lately I am noticing saliva can increase when I eat and sleep but I have put this down to the mestinon affects. I have noticed too temperature changes too hot or too cold can trigger the MG off, anyone else found this?

The reason I am so tired is coping with MG and also I have another health issue which keeps me awake most nights hence the reason for my sleep all out of zinc, I sleep, rest do a bit of work and repeat 24 hours a day. This is why I think I am so fatigued, but he feels it could be CFS - hence the EMG test. Let's see what the EMG test results are I will let you know.

Here is an abstract he has written in the letter - many of her symptoms do not appear to be consistent with Myasthenia Gravis. The highly variable muscle weakness that she describes and the feeling of severe weakness the day after exercise is more suggestive of chronic fatigue syndrome rather than myasthenia. The Myasthenia also does not appear to be explanation of her sensory symptoms.

Another abstract - Clearly she does have a consistency mildly elevated ACR antibody the exact significance of which rmains uncertain and may indicate an underlying mild myasthentic syndrome.

In his letter he does say I will need to come off Pyridostigmine (mestinon) for a short time to have this EMG test. I still do not know when I have to stop but hoping when the EMG appointment letter comes through it will say when to stop the mestinon.

When the appointment finished it was when I shook his hands he said "We will sort this out, at least we can try and get some of these things off the list" this made me think hang on mate are you inferring that I am not a Myasthenic! wish I asked now, we always think after the event don't we.

I hope I have explained it a bit better than my first posting, sorry if I caused any confusion.

Bo x

RE: MG and CFS (chronic fatigue syndrome) 09 Mar 2011 14:30 #981795

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Hi Lynette,

Thanks for your reply. I also have a new neurologist seems to me like they are inferring we have CFS I do not understand. My last neurologist who I had since 2006 never mentioned CFS to me before. He has always treated me with Mestinon and said I cannot take any steroids due to the diabetes. I have been told I can increase the metinon if I get a bad day. I take 4 daily at the moment and can increase to 6 max a day.

I agree when you say numbness can be felt in the hands and feet being a diabetic if sugars are not controlled and I must admit my sugars do go out of zinc sometimes but I can safely get them back to the correct reading.

After reading quite a few postings on MG - is it me or does it appear many people experience MG in different ways?, it is a very strange condition, I do not have the droppy eye problem for instance which is I think a classic sign of MG, am I right in thinking MG affects people in different ways?

End of September of last year I was in hospital for something completely different and when my food arrived I collapsed, the nurse thought I was tired, I said no I am very weak I literally had to roll onto the bed and lay there, no one understood what I was going through. If only the people who treat MG or anyone who does not understand what we go through could just slip into our bodies at that precise moment of collapse they will soon know what we are talking about it is a very scarey thing to go through and I have to add it just comes on at anytime, ie: watching TV then the sudden whoosey feeling then the sudden collapse of body, the sheer weakness, cannot move, cannot see, cannot talk, but strangely can hear, and then we have to just wait until it clears. If only they knew what it was like.

Bo x

RE: MG and CFS (chronic fatigue syndrome) 09 Mar 2011 14:40 #981798

  • ragdoll
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the neuro has clearly got confused due to the sensory symptoms, I don't get those, but because of those it causes him to think of other things, this is the language issue, however it is his job to recognise the MG symptoms which are fairly classic IMO.

With MG because of its variable nature if you do not tell him or discus your worst days then he will assume they do not occur, after all he did not see them, he can see what you are like when your are there, that is not pertinent at that time.

He has about 10 minutes to understand what you say and you have only that time to explain, focus on the objectives, keep a diary of your symptoms. Record the activity you undertake and the consequences, eating pattern etc etc..That may be more helpful. Maybe video tape or take photographs - all irrefutable and objective proof, and not subject to interpretation or explanation that can be misunderstood.

I think your lack of sleep is aggravating your myasthenia, if I don't sleep I end up having very bad days. Please try to get some solution for that, I am very concerned that your are not being well managed and are clearly at a low point (physically I mean)

RE: MG and CFS (chronic fatigue syndrome) 09 Mar 2011 14:45 #981801

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It might be helpful to talk to one of the MG nurses, local to you, details on the main website.

RE: MG and CFS (chronic fatigue syndrome) 09 Mar 2011 15:25 #981813

  • bo01
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Hi Palo,

Thanks for the advice much appreciated. I will definately do what you suggest and keep a daily diary from now on including any choking episodes, weakness or anything wierd going on plus record when that horrible whoosy feeling comes over and you end up totally unable to move I will get my husband or son to take a picture, like you say it may help the neurologist to have a more understanding.

Regarding my sleep unfortunately due to another health issue not the diabetes but something else it keeps me awake, I am up and down like a yo yo most nights, I tend to cat nap throughout the day to catch up, I do get plenty of rest and really limit anything energetic. I work at home on a PC this keeps my brain active which is really good.

I have joined the South West Neuromuscular Network they may know of someone local to me I will contact them to see if they know of any help in the Bristol area.

Thanks for listening I wish you well

Bo

RE: MG and CFS (chronic fatigue syndrome) 09 Mar 2011 16:19 #981872

  • Carol O'Connor
'Another abstract - Clearly she does have a consistency mildly elevated ACR antibody the exact significance of which rmains uncertain and may indicate an underlying mild myasthentic syndrome'.

Hi Palo

I'm confused by this - I thought it wasn't the amount but the fact that the ACR antibody test was positive which diagnosed Myasthenia. Why would he say 'underlying mild myasthenic syndrome' I get more confused the more I try to understand. When I asked my neuro about the levels - he stated the level was not important - that there could be a few strong ones and a lot of mild ones. Have I got the wrong end of the stick so to speak.

Carol

RE: MG and CFS (chronic fatigue syndrome) 09 Mar 2011 16:23 #982018

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no that is entirely consistent with my own understanding, bearing in mind, when I was diagnosed, I too had a low reading, but a crisis less a month later, so to me the numbers are immaterial..

RE: MG and CFS (chronic fatigue syndrome) 09 Mar 2011 21:37 #982046

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Hi Bo

sound like you do have MG, as well as your other problems. I'm negative on MG tests so don't have modern neurologist diagnosable MG even though Mestinon is dramatically effective. But I have something other than chronic fatigue i'm sure. I did have a diagnosis of MS at one time but now don't tick all the boxes for that diagnosis either.

Why do you have a new neurologist? Did your previous one leave? It may be that not all your symptoms are MG eg the diabetes, but that doesn't mean you don't have MG.

good luck. my EMG was negative, I didn't find it too unpleasant having it done. You only need to stop th mestinon for a few hours for the EMG.

Lynette

RE: Questions on MG and EMG 10 Mar 2011 14:46 #986942

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Hi Lynette.

Thanks for replying, I have been waiting for a year to get this recent appointment I was told throughout the year my other neurologist is ill and then I got an appointment to see a new neurologist.

Thanks for letting me know you found the EMG test was not too unpleasant, I had one done a few years back but was a limited test as I was on warfarin at the time. This new neurologist has suggested a full EMG this time, I got another letter through this morning to say it would be useful to do some additional electrical tests on your muscles to look for possibility of any further evidence of myasthenia.

He has also mentioned to stop taking Mestinon 48 hours prior to the test. I will let you know when the EMG test appointment arrives.

I wish you well Lynette and I hope you find a diagnoses soon for your health.

Thank you so much for all your advice and help.

Bo

RE: MG and CFS (chronic fatigue syndrome) 11 Mar 2011 07:10 #989281

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Relevant extract

Hans D. Katzberg, MD, MSc, FRCP
University of Toronto
Relationship between the Quantitative Myasthenia Gravis Scale (QMGS) and Clinical,
Immunological and Electrophysiological Markers of Disease Status in Myasthenia Gravis
There are several scores that evaluate the severity of MG. The QMGS measures strength in the limbs,
mouth and throat muscles, how long it takes for weakness to develop, and the severity of the
weakness. This score is very useful when trying to determine if an intervention has improved muscle
function. There is a good correlation between QMGS and the more general MGFA clinical
classification scale, which evaluates the overall severity of disease. Therefore the muscle
performance is a good measure of overall state of the disease. The AChR antibody titres (amount of
antibodies present in the blood) do not correlate well with QMGS scores – i.e. AChR antibody titres
2
are a marker for disease presence, not disease severity.
There were strong correlations with overall
EMG and particularly with the EMG measure of “jitter”. Jitter is a measure of the variability of the
neuromuscular junction function among individual muscle fibers that are innervated by a single nerve
fiber.

RE: MG and CFS (chronic fatigue syndrome) 31 Jul 2011 13:16 #1313500

  • jemima
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I read your post about the is it chronic fatigue or MG thing, I am in the same boat, I wondered how you are now and where you are with your condition. Have you been told you are seronegative?
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