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Old 11-23-2022, 04:09 PM #1
Comeonthen Comeonthen is offline
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Default MS or Myasthenia ?

Hi

I have had five specific bouts of neurological symptoms over the past ten years, approximately 2 years apart.

The symptoms are 'loss of balance', stiff legs/arms and difficulty walking. On two occasions I also had 'slow moving arms and legs' and a symptom where my right arm and / or leg would stop for a microsecond before continuing.

The bouts usually last for 3 months and slowly improve over this time, with rapid improvement in the first few weeks. I am usually left with some degree of compromised balance and stiffness afterwards, although no big deal. All bouts were preceded by infection, injury or trauma.

Most testing is negative (including multiple MRI and antibody testing). I had an abnormal single fibre EMG result in the ocular muscles, but no overt ocular symptoms. I found that magnesium supplements can cause muscle weakness within hours, as can regular physical massages.

Could this be myasthenia? I have seen five different neurologists who have not made a diagnosis.

Thanks
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Old 11-23-2022, 08:29 PM #2
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Hi, Comeonthen,

Here's something about myasthenia gravis:

Myasthenia Gravis Fact Sheet | National Institute of Neurological Disorders and Stroke

Since you've consulted several doctors and had no clear diagnosis, maybe you'd be more at ease if you just coasted along for a while, doing whatever you can to help to ease your symptoms. You may find ways of working around some of them.

And keep a log of your symptoms, along with a record of any infections or trauma. After a year or two you might want to go back to your search for a diagnosis by seeing more doctors, or returning to previous doctors.

Myasthenia gravis and MS are both difficult to diagnose. Often a person goes for years before being diagnosed definitely, and even then there are errors. I know this isn't encouraging, and I'm not saying you probably have one or the other. It's possible that you have some other problem entirely. But I do think it might be time to stop looking for a diagnosis unless you find you're no longer able to function at the level you need to.
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Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: Glatopa (generic Copaxone), 40mg 3 times/week, since 12/16/20
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Old 11-24-2022, 01:45 PM #3
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Thanks. My main objective is trying to avoid future 'attacks/episodes'. This probably requires a diagnosis, or at least an 'idea' of what is going on. I am unclear if each episode is causing long term damage, but it is certainly not doing me any good. It also means I lose a few months of my life each time this happens

Most of the reading I have done suggests its important to treat neurological conditions early in the course of the disease. Given this has been going on for over 10 years, it would seem unwise to just 'wait to see what happens next'
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Old 11-24-2022, 03:23 PM #4
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You've been to quite a number of doctors but your efforts to get an answer haven't succeeded. Maybe you're not giving the doctors the information needed for them to figure out what is going on.

That's why taking a break from seeing doctors for a while and just keeping a careful record of what your symptoms are and when they happen and how severe they are would be useful. If you do this for a while and look over your record, you might see patterns that you hadn't noticed. And then you might have a clue about what triggers some of the symptoms--and you could modify your behavior so as to prevent them.

I do this with MS problems and have the impression that people with other neurological disorders do that as well.

Yes, many neurological disorders do benefit from being caught early because the treatments that are available work best if started at disease onset. But you've already had these problems for 10 years and haven't been lucky enough to get treated for a specific disorder. Maybe it's time to try something different, like giving the doctors a pass for now and just concentrating on figuring out for yourself what is happening and when. Then the next time you visit a doctor, you can go with a clearer picture to present. All the doctor has is what you tell him/her and what he/she observes, and there may not be much observing during the 20 minutes or so when you're being seen.

You don't want to get too long-winded about it, of course. You want to be able to sum up the picture in as few words as possible, but you can do that once you've kept that record and looked it over, but it will take time. Give yourself at least a few months.

Also, since doctors have a way of not looking at a patient's history, you should go in there with a record of any significant results from tests you've already have. If you have a copy of the actual test results or MRI films or whatever, bring them too. The doctor should be aware of how long you've been trying and what has already been done even though a lot of doctors want to start fresh without paying any attention to your history. You should try not to let that happen. Your history is relevant.

And many doctors who are aware of your 10-year history of attempts at finding out will be apt to dismiss you as "doctor-shopping" or one of the "worried well." That's why you should be prepared to present your case clearly but succinctly, and by all means unemotionally. You and the doctor are a scientific team who are trying to solve a problem together. You want to try to be as objective as you can about your symptoms.

Be your own doctor for a while. Observe and make notes. Keep the notes in the form of a record over time. Have a piece of paper or a place in your computer and whenever you have stiffness or whatever, jot down the day, the time of day, the severity of the symptom and any other useful details about it, and what you were doing at the time. If you're affected by temperature and it was too hot or too cold at the time, mention that. If lack of sleep makes things worse for you and you had a bad night, mention that. After a few months you should have enough of a record for you to get a picture of what is going on and when the bad things are apt to happen.

Neurologists are interested in some odd things. Even whether or not you swing your arms while you walk means something to them. But you have to do the observing so you can make them aware of situations that they might not be seeing there in the office in that short time.
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Repeal the law of gravity!

MS diagnosed 1980. Type 2 diabetes, osteoarthritis.
Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: Glatopa (generic Copaxone), 40mg 3 times/week, since 12/16/20
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Old 11-25-2022, 10:27 AM #5
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Thanks for the suggestions. It may not of been clear from my post, but I have actually not been going to the Dr's on a regular basis, so no need to take a rest from them I tend to visit a neurologist when I have an attack / episode, have the tests, then just stay away until the next attack and try to live a normal life.

I have not visited a Dr for the past 1.5 years. I had an attack a month ago, but decided not to go. I am just praying the symptoms will slowly disappear, as they have in the past. Although after each attack, I feel as if I never recover 100% (but enough to carry on living my life as normal)

I have a very clear list and record of symptoms (have been doing that for 10 years!), which have also been recorded by the doctors on each event.
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Old 11-25-2022, 03:59 PM #6
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Comeonthen, I'm glad you've already been keeping a record and providing the doctors with it. It sounds as if they've been willing to use that record and haven't just ignored it, and that definitely looks as if they're at least taking your symptoms seriously.

I looked back over your previous posts and found that in 2015 you mention having had several MRIs, and you mention having seen more than 12 doctors over the past 3.5 years.

Given that record of so many visits to doctors, I thought it might be time to try something different for a while, but you've already tried my suggestion. Now here's another:

In 2018 you mention that you had a single-fiber EMG test with abnormal results--twice, pointing to asymptomatic MG. You also mention that you didn't try the pyridostigmine the doctor suggested.

Since this diagnosis or pre-diagnosis of MG is the only clear finding you seem to have had so far, why not return to the doctor who was willing to prescribe the pyridostigmine and give it a try? It's possible that you have MG and the symptoms you have been having are evidence that it's acting up.

Pyridostigmine is one of the standard treatments for MG:

Myasthenia Gravis Fact Sheet | National Institute of Neurological Disorders and Stroke

I can't say anything helpful about the white spots on your MRI except that the number of white spots found doesn't seem to matter so much as their location and appearance. MS is a difficult disorder to diagnose, though, and there are those who have MS without any MRI lesions. I've had 5 MRIs, and on some of them there has been no exact count of the lesions. It is just noted that they are present and indicative of MS.
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Repeal the law of gravity!

MS diagnosed 1980. Type 2 diabetes, osteoarthritis.
Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: Glatopa (generic Copaxone), 40mg 3 times/week, since 12/16/20
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