New diagnosis please help
 

Hi I was recently put on pyridostigmine bromide to see if it would help with my symptoms.

I was in a wheelchair for 3 1/2 years and went through a few hyperthyroid storms and have had my thyroid removed.

I still show antibodies for Graves & hashimoto's.

Now I am showing antibodies for MG. EMG was negative waiting on CT on thymus.

This has all been on going for over 10 years I'm 31 and have just wanted to know what it was so I could treat it.

Also have vitamin D and vitamin B-12 deficiency.

My question is does anyone else have any of these same issues? Also how long does it take for the medicine to work? Also do the side effects go away after a while. Running to the potty isn't so fun all day?
Thanks so much for any advise or answers.

Are you under the care of a neurologist?

Welcome November 1982. :Wave-Hello:

Hi, November! Wow, it sounds as though you have similar issues to a lot of MGers.

B12 and D deficiencies are quite common. Did they determine why you had the B12 deficiency? Have you been tested for celiac disease? Did they run the parietal cell and intrinsic factor antibodies for pernicious anemia?

I hope you have a good endocrinologist. Those thyroid problems can wreak havoc on you. Are you on any thyroid meds?

How much Mestinon are you taking? Some people do have "runs" on it. It helps to take it with food, since Mestinon can increase stomach acid (you need acetylcholine to make stomach acid, plus histamine and gastrin).

With so many antibodies, you might want to consider seeing an immunologist for a consult. They can assess what other issues you might have.

How is your weakness?

Please let us know what else we can do to help, okay?

Annie

Thx!
 

I'm on 60 of the mestinon twice a day. In Jan I will reevaluate and most likely go to 3 a day the neurologist said.

I take synthroid 224 mcg once a day. My thyroid was quite a problem at first but not so much now. It's been under control for a few years since I had my thyroid removed in Oct 2010.

I seem to be adjusting to the medicine well. It seems to help until about 2 or 3 O'clock then I'm tired. I'm busy I have never been one to sit still. I bake cakes and things for a hobby. It's been a blessing to have something to do to be good at. But to do at my own pace.

I'm really thankful to all of you for your response. Sorry I couldn't figure this out so took me a while to find the messages. God bless!

Yes I am under a neurologist care. She has been the only one to finally listen and not make me feel crazy.

Nov, so sorry for all you have been through. I had large nodules on my thyroid when I was 21 (34 years ago) and had half of it removed. They did not do antibody test then but it is assumed by my endocrinologist it was Hashimotos. I a on synthroid - 87 a day, I still have half a thyroid. I think I had MG for over 15 years, but was officially diagnosed 2 years ago. A lot of MGer, I think I read 1/3, have thyroid issues prior to MG. Which antibody level was positive - Achr? There is more than 1. Most MGers are ACHR positive and many have hyperplasia of the thymus, another endochrine gland. You should ask your neurologist for a scan of your thymus. Many MGers have their thymus removed and experience remission or improvement of symptoms. I highly encourage you to see a neuromuscular specialist at a large teaching hospitals that see MG all the time. MG is so rare most local neuros have never seen it. Mestinon only temporarily improves symptoms for a few hours. Most MGers also take a disease modify drug like an immunosuppressant. Most start on prednisone because it is fast acting but also take cellcept or imuran which take months to start working. Prednisone has lots of side effect, they start to wean you off as the long term drug like cellcept kick in because it has fewer side effect.

Good luck on you MG journey and keep us posted on how you do,
kathie

Yes it was the Achr that came back positive. It's all so overwhelming I'm trying to read about it and know what to do. I've lived with it for almost 11 years but no one could explain what it was. So I've adapted. I know my limits. I'm not afraid to say I need a nap or I need to sit for a while. Thanks!

you can find some good web sites for MG if you google myasthenia gravis and mayo clinic, MDA, or MGA. If you register with the MDA they will send you newletters, let you know if there are meeting in your area and provide loaner equipment. i am on the wait list for a stair lift.

kathie

I hope you will seek out a second opinion about the thyroid issues.

My endo said that some patients need to take a more natural form of thyroid medication and do better on Armour Thyroid or NatureThroid. A cardiologist I saw also said that her heart patients do better on those as well.

Also, some patients need to take the tablets twice a day, for they do run out at some point in the day (according to my endo).

Do you take Mestinon with food? Ask your neurologist about what you could do to offset the side effects of Mestinon. Some doctors start patients out with a lower dose to see if that helps alleviate any side effects (talk to your neuro before making changes, however!).

Give yourself some time to adapt to knowing that you have this disease! There's a lot to learn and it'll take some time.

www.myasthenia.org
www.mdausa.org

I hope things are going well.

Annie