Hi, everyone. I have been off-line for a few weeks because the nerve pain I had been experiencing took over my life. Every time that someone touched my right palm, inner elbow, or shoulder, my back arched up like a cat and I felt as if I was being stabbed with knives from my shoulders to my fingers. Also, I couldn't walk because the arch of my left foot set it off as well. I saw my neuro and he put me on Tegretol, which makes me feel like a nauseated zombie so last night I decided to not take it any more. It wasn't helping much anyway. I have another appt. on Thursday so I will see what the dr says then. He recommended that I should hit the Acthar again, but I just went through a cycle at the beginning of June and because of the cost, because I am on Medicare Part D and couldn't qualify for a charity to help defray the $6,500 co-insurance (we had to break into our retirement investments to pay for it) I had to determine whether this issue was "Acthar-worthy" and I decided to try to bear the pain rather than do it. It may come to that, but not yet. I know that it's coming from the brachial nerve in my neck, and it got so bad at one point that I started crying and I never do that. I did find a strain of medical cannabis called, appropriately enough, Neuropathy, and it does seem to calm it down although the relief is temporary. I might go to the 3-day solumedrol infusion and see if that works. But in the meantime, I started having horrible gastric pain again, and I thought it might be from a new medication I'd been given for urinary incontinence which the MonSter also caused. I had a CT scan and an upper endoscopy, which showed bad inflammation and an 8 mm cyst on my adrenal gland. I am concerned because of course the adrenal gland is forced by the Acthar to make excessive amounts of corticosteroid, but the gastroenterologist doesn't think that the cyst and the Acthar are connected. He says that such cysts are not uncommon as we age and he wants to just monitor it; another CT in 6 mos. and he doesn't feel there will be any change. My liver enzymes were also elevated--could be the Tecfidera--and that scares me a little because I had the liver cancer when I was 19. Now I need another blood test. But the gastric upset was caused by a new migraine med. In short, the whole experience has been a real cluster.

I was glad to see that a whole slew of new MS warriors has joined our little club that nobody wants to be a part of. Welcome, everyone, and I hope that you find this site to be as supportive and welcoming as I have found it. I look forward to chatting with old and new friends!


8 Replies

  • @Suk

  • Sukie427 i am so sorry you are having such s tough time. My symptoms seem mild compared to all yours. I send you a big hug!

  • Thanks, Agapepilgrim. I would never discount anyone's symptoms. We all have our own burdens to bear. But I appreciate your hugs!

  • Hi Suki, glad you are back, I was wondering where you were. I am so sorry about your condition. I was put on Tegretol and after 6 months I was taken off it very quickly. I was having a severe reaction to it, but my doctors didn't recognise the symptoms, so it was when I saw my neuro she took me off it that day. I was highly allergic to it, I was even treated for headlice and scabies, didn't have either, the reaction started in my head and worked its way down both legs, but it took nearly 6 months to get to my legs. Apparently it can give you heart failure, so I thank God that it was caught in time. Have you tried having acupuncture? My brachial nerve was caught and severed by a disc in my neck, it's painful, but it was the acupuncturist that realised what was going on. I had an MRI scan and within 4 weeks they were operating. I constantly had a wheat back in the microwave and around my neck. Anyway I hope you get sorted, let us know how you get on, again good to hear from you, Jimeka

  • Sukie427 geeze can't leave you alone for a min. :) So sorry all this hit you all at once hopefully your feeling a bit better now. Welcome back we missed you! :)

  • Hi, Sukie, I'm Dawn, but I go by Tutu. That's what my grandkids call me. It's Hawaiian for gramma. I'm really sorry to hear about all the pain you've been going through. What misery! I pray you feel much better soon.

  • I hope you feel better I know that is all relative, but you know what I mean to be able to get around and do something my prayers are with you and all of you we have to all stick together.

  • Sorry this is so late but I am 2000 emails behind! Thanks for all of your good wishes, and Mahalo to you, Tutu. As you all know by now, things got even worse. But I am coming back slowly.

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