MuSK came back negative
 

So as of now only positive test is abnormal sfemg in eye muscle only. Doc said probably Myasthenia but not the only thing that can cause ptosis, double vision, weakness and abnormal sfemg but when I tried to question what else it could be I didn't get any answers. Mestinon isn't really helping so doc is looking into other med options. Double vision is driving me nuts!

Short term, your best option is to patch one eye. Messes up your distance vision, but will get rid of most DV.

But the only diseases that cause FATIGABLE weakness are MG, LEMS, or a CMS.

Have you been to a neuro-ophthalmologist? They can do specific tests to check for fatigable muscle weakness.

Has any neuro seen fatigable weakness on a clinical exam?

Have you been to a pulmonologist to see if you have fatigable breathing issues?

Before you slam down any heavy duty drugs, make sure what is going on first. After you take immunosuppressants, it's near to impossible to determine what is going on!

I hope you can figure all this out for sure and then get more help!

Annie

Thank you both for the replies.

I was told to not bother with the neuro- eye doc after the abnormal sfemg but now after the sudden worsening in vision and the migraines it's causing they are trying to get me an emergency appointment. The neurologist said she wants to make sure it's myasthenia before starting heavier meds, I want to be sure as well. Prednisone has been bought up and being diabetic, it will make it very difficult to manage.

The report sent to my family doctor fatiguable weakness in my eye muscles and just this week she said noticeable weakness in my arms after making me hold them at my side for less than 2 minutes. I do see a lung doc and luckily am fine myasthenia wise on that front.

If you're diabetic, you should NOT have steroids. See my post about steroids/MG (MGFA newsletter).

What about IVIG or other immunosuppressants?

Migraines can be caused by all sorts of things, such as MSG (normally occurring in foods such as cheese, tomatoes), circulatory issues, clotting disorders, and allergies, and the list goes on and on.

Do you keep a log of when the migraines occur and anything that might be associated with them (food, eye strain, muscle weakness, bright lights, changes in high/low pressure systems)?

Just trying to help! I hope you get it figured out soon.

Annie

I agree, I don't want steroids but was told I may need to 'manage' my diabetes with them. However I picked up a report I had done from a bone scan that says I have reduced bone density(from yet another condition), so I can show the neuro as further proof against prednisone.

The migraines run in my family, I've had them since I was about 7. I have been on topamax for migraines and seizures and they have been pretty well controlled but I think my eyes being unable to focus has bought them back.

The one plus is my neuro is calling my immunologist about what treatment he is okay with and and I trust him. He wants to get me in to see a geneticist, as he says I have way too many issues going on but unfortunately it takes over a year here in Canada for an appointment. It would be nice if there was a link to all my conditions, I feel like I am collecting the like baseball cards some days.

Meech, You might find this interesting.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2931619/

Have you seen an endocrinologist lately? Have you had your electrolytes (all of them, including magnesium and phosphorus) checked lately?

Besides that article, there are dozens more on Polyglandular syndromes.

I'm really sorry you're going through so much!!

Annie

Thank you! I will give that a look.

I see an endo every 6 months and have had extensive blood work done by a hematologist looking for a reason for an constantly elevated wbc (not really really high) it was even investigated as far as chronic leukaemia, nothing serious was found, just some things slightly off. This has stayed the same since I've been seeing the hematologist for about 18 months. I figure after 17 vials of blood in one shot they should have found something if there was something to find.

On the positive side I did get an appointment with the neuro-opthamologist for Tuesday morning. So maybe he will have some answers.

Thanks again

Neuro-opto gave me my first DX. Started me on heavy Steroids but it cleared up my double vision problems. I am type 2 diabetic but had no problems. I am down to 5mg of prednisone after 5 years. Takes long time to get off.
Mike

Thanks for the reply. I've been on low dose steroids for a few days for allergies and it did send my blood sugar way up, but maybe because I'm not type 2? Or it could just affect each person differently. I'm glad it worked so well for you.

Oh how I wish I could take this into my next neuro appointment... Been to a neuro-ophthalmologist... blamed dv on blinking, but I still have the DV, though no more blinking. Didn't seem able to check for fatigable muscle weakness.

Neuros have seen fatigable weakness on a clinical exam, but the bloods were negative.

Couldn't complete the tests at the pulmonologist due to fatigable breathing issues.

No droopy eyes, so I clearly don't have MG!!!!!!

Dutch specialists suck.

Everything I read on MG only says "usually" droopy eye. I don't know if you don't have that if it excludes MG. LEMS is a simple antibody test.

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What you have read is correct. A large percentage of MG sufferers don't have a droopy eye. However my experience is that without the classic droopy eye, it is much much more difficult to get a diagnosis.

You said. "No droopy eyes, so I clearly don't habe MG!!!!" And assumed you meant it. I didn't read the sarcasm. I understand now. Yes. I think my doc is stuck on MG only BECAUSE of the droopy eye. She won't do a lot of other tests even though I am seronegative. I had a positive LEMS test but she said it must be false positive because of the lab where it was done. Now it's neg but I am immune supressed. I have such lower limb weakness so bad it really seems more the real thing then MG. Just glad mestinon is working for me.

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Sorry... yes sarcasm... unfortunately there is no smilie to indicate exasperated frustrated sarcasm. Sorry. :wink: