[myjas]

Hi all. I'm new to this site and MG. I'm still waiting for an official dx of Mg through a blood test. I am about to go nuts. I have been out of work since Feb 23rd for severe fatigue and generall blah feeling. About 3 weeks ago I got what fam dr thought was bells palsy so I went to my migrain neuro. She didn't think it was atypical for bells palsy. So here I am. I have been researching MG and see alot of symptoms fit. I Quit smoing 4 years ago and got into biking to get fit and loose the weight i was putting on. Always had trouble breathing but blamed it on cigerettes. 2 years ago went to pulmnonary dr because my breathing still was not that great when biking, was told sports induced asthma. Well now that I read all about this disease and all my other symptoms I have had for years and said to be something else, It all kind of make sense. I know I'm rambling but this is the first place I have found that people understand.

Another symptom I have had for years was the blah gravity pulling me down feeling about once a month was blamed on PMDD. Was even placed on birth control. I am in my 40's and "fixed". I would think my blood pressure was bottoming out.

Ok the reason I posted. I have had these blah episodes several days a week. I am still waiting for blood test to come back. Haven't seen my fam dr yet to tell her what neuro thinks. don't go back to neuro till May 9th. I am loosing it sitting here. I am sure I am depressed. Finances are going backwards. I feel worse all the time. Do I push Some one for something? Meds?(I did do prednisone for Bells palsy, did nothing) IV? Plasma? What? I am totally lost and just getting more lost. I just break down and cry. I am not one to just sit here. I can't do any activities because of the way I feel. Which I'm sure you all understand. OK I will quit now

Thanks for any advice,
Veronika

[Stellatum]

Hi, Veronika. I'm so sorry for what you're going through. Most of us here were hard to diagnose, so we're all familiar with the terrible stage you're in--waiting for answers, not knowing what to think. I was so relieved to finally get my diagnosis: I was just emotionally more up to facing these changes if I knew what they were! We sure can undertand your depression, but I think you will be more able to take charge of things--mentally, I mean--if you get a diagnosis. I have been seeing a psychologist lately to help me figure out how to cope with the changes in my life.

One thing in your post I recognized is the episodes right before your period, that they were calling PMDD. My myasthenia symptoms always get much worse at that time (and others on this forum have said the same).

Many neuros are willing to give a patient a trial of Mestinon (Pryridostigmine) if the symptoms look like MG, even before the blood tests come back. Most of us here are on Mestinon. Some people get great results from it.

The blood test you had is to look for antibodies. Not all people with MG have the antibodies, so if your test is negative, your neurologist will probably want you to have another test--a single fiber EMG. But if the blood test is positive, that clinches the diagnosis.

This is a great support group, so please feel free to ask questions, or share experiences, or just vent.

Abby

[suev]

Hi Veronika - - and welcome!

Like Abby said - the blood test for antibodies can take awhile to get back. And unfortunately, it doesn't always show positive even if you really do have MG. If your test were to be negative, there are other tests that your neuro will want to do. But, until the blood work comes back - you're kind of stuck. Pushing and / or seeing other docs won't really help. And no one is likely to sign off on any treatment until the blood work comes back.

And even if you have to have more tests, they aren't so bad ... but the waiting for the results sure is! We have all been where you are (some folks here are still waiting for a diagnosis) and know what a crummy place you are stuck in right now.

Hang in there and come her to vent as often and as loudly as you need to. May not solve a whole lot - - - but it does do wonders!!

Wishing May 9th comes very soon for you....Sue

[rach73]

Welcome to the site, its great for info on MG and other stuff.

I want you to check out this site http://potsplace.com/

and their forum http://forums.dinet.org/

I don't disbelieve that your symptoms could be MG, but some of your symptoms also overlap with autonomic nervous system dysfunction(ANS) . The symptoms that sound alarm bells for me are the worsening of your symptoms around your period - same happens with ANS issues. The overwehlming fatigue -also ANS symptom as our bodies have to work so much harder to pump the blood to our brains and our system in general.

The muscle weakness can also be a sign of ANS dysfunction, plus you talked about your blood pressure bottoming out. Have a look at POTS place and Dinet and see the instructions for a poor mans tilt table test.

ANS can also cause breathing problems especially when exercising. For me my breathing problems occur as soon as I move.

Your story sounds very similar to mine. I had a horrific migraine in January 2007 and 5 days later developed facial weakness and ptosis (droopy eye). I too was initially diagnosed with bells palsy. The fatigue killed me, I struggled for over a year trying to work full time, run a house and look after three dogs. I have just started treatment now on Florinef, it hasn't made a massive difference at yet but there are various meds that can help.

The ANS stuff is definately worth a look. I still believe I have occular MG, but I also have postural orthostatic tachycardia syndrome, probably ehler danlos syndrome just waiting for a diagnosis (I am very bendy), Vit b12 deficiency as well.

Mestinon which is used in the treatment of MG relieves my ptosis.

I hope this helps

Rach

please look at the post by roguepuppet title is something about diagnosis, I have just bumped it up for you

[myjas]

Thanks for the posts so far. I did get a neg blood test and my fam dr has a phone call into my neuro to see what is next. Rach, My blood pressure doesn't drop I just feel like it is all day, completely drained, heavy, blah feeling. At my work we have a bp machine and I have checked it and it is fine when I had this issue and it always seemed to be mid cycle. Now since Feb. its all the time.