New here... Old to MS

[Lizmcswain53]

I am in my late 50s and thought i was a fairly intelligent until this last flare. 26 days of nothing but sleep. Lost feeling on left side of face and throat. Dr does not seem concerned, no big. But i can not continue to stay in bed and do nothing. This is not normal for me i stay active. I have blisters on both palms, 2 or 3 inches, the ltmph nodes in scalp have been larger than walnuts and now i have a major rash on neck no one can tell me anything. Is this normal for a flare? Will i get my energy Back? I have had a round of Acthar Gel 10 days. HELP!

[KoKo]

I am in my late 50s and thought i was a fairly intelligent until this last flare. 26 days of nothing but sleep. Lost feeling on left side of face and throat. Dr does not seem concerned, no big. But i can not continue to stay in bed and do nothing. This is not normal for me i stay active. I have blisters on both palms, 2 or 3 inches, the ltmph nodes in scalp have been larger than walnuts and now i have a major rash on neck no one can tell me anything. Is this normal for a flare? Will i get my energy Back? I have had a round of Acthar Gel 10 days. HELP!

Hello Lizmcswain

Welcome to MSWorld - glad you found us here.

I'm sorry to hear about the problems you are having. Some of them don't sound like the results of having a flare (but then I have no experience with them, as I have Primary Progressive MS).

Maybe other members with experience will chime in on this.

It isn't right that your doctor doesn't seem to be concerned. Is this a neuro, or your primary care doctor?

Did he say anything about the cause of some of your symptoms, besides your having a flare?

So sorry you are dealing with this.

Take Care

[Myoak]

By chance are you on Tecfidera? If so, you may have the answer to the rash. It almost sounds as though you are allergic to something, possibly the DMT you are on. May I ask what DMT you are on, if any, and for how long? Definitely try to see a neurologist, Liz. You are in my thoughts and prayers.

Best wishes!

[Lizmcswain53]

Wouldnt it be awesome if we were all exactly the same? Seems that with this flare a little u. T. I. And a tiny cold sore added up to stephens johnsin syndrone. Lol. Auto immune diseases are the greatrst things in the world. Its just rwally difficult to deal with that nameless demon. Nothing in our screwed bodies happen the same way and its time my doctors listening to ME. We the chosen ones with MS know when something is not right. Thanks for all the answers and help guys.

He who has no scars has fought no battles!!

Give em hell MS warriors

[Tia1]

Stevens Johnson is pretty serious! I will be praying for your recovery! Do you know what medicine you reacted to?