[treenatureindia]

Firstofall, I thank you for spending your valuable time in reading this email.
I am unmarried woman aged 33 years. I am suffering from congenital myasthenic syndrome or CMS and taking treatment from NIMHANS, Bangalore.
My symptoms of congenital myasthenic syndrome are as fallows:-
1. Drooping of both eyelids. no movement of both the eyeballs.
2. No Respiratory problem, can breath easily.
3. Little bit of swallowing and chewing problem.
4. weakness in whole body
5. No Double vision.
6. Can see clearly.

No one in my family has CMS or myasthenia gravis or no history in my family had CMS or myasthenia gravis.

Now, I am taking Pyridostigmine bromide 60mg daily 5 tabs.
From 2002, I was taking Corticosteriods 30mg daily for about 3-4 yrs. With Doctor’s advice, from 2005, I tapperdown Corticosteriods and with God’s Grace, now I completely stopped taking Corticosteriods.

Three years back,for some days, I took Cellcept tabs and now, I stopped it completely. At present, in addition to Pyridostigmine bromide tablets, I will take Meganeuron OD Plus and Antoxyl Forte and Potklor syrup and Gravitor SR tabs. This four medicines I will take (as and when required) whenever I go outside or when there is more work or when there is more weakness.

At present, I am having moderate weakness.

We are non-resident of Bangalore. Suddenly, my sister's marriage has been fixed and there is no time to come to Bangalore and consult you and also ask for any more powerful adjunct medicine (powerful medicine/general medicine) other than the above four mentioned by me. I don't have any other diseases other than myasthenia gravis.

Please tell me the name of any powerful adjunct medicine (supplementary medicine) other than the above four mentioned by me,so that I will be very grateful to you.

Waiting for your early reply
thanking you

[AnnieB3]

Hi. First, let me clarify something. You have been diagnosed with a congenital myasthenic syndrome and NOT myasthenia gravis?

If you have CMS and not MG, then the doctors have not treated it appropriately. CMS is a genetic disorder. It is NOT an autoimmune disorder. None of the syndromes can be helped by Prednisone, Cellcept or other immunosuppressants, or IVIG.

And not all of the syndromes have the same treatment. Some of them are situations where there is too much acetylcholine. Some people have insufficient acetylcholine and some have none.

No one here can "prescribe" anything and really can't recommend any treatment! You need to see a doctor to do that. And if you are from India, they have centers that use alternative medicine.

Since you are having moderate weakness, you need to see a doctor right away.

Annie