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Well.....

Posted , 4 users are following.

joanne90460
joanne90460

saw my Specalist today in Brentwood (he is the best and he's worth travelling to see). He is now thinking more that I have Eposidic Ataxia opposed to Hemiplegic Migraines due to my unsteadiness and eye movements. I am to take 500 mg of Diamox 2 in the morning, 2 at night And Soduimn Valproate 200 mg. Also said I had Chronic Fatigue ..will speak to my NHS Consultant to see about Steriod treatment to boast my energy levels. MRI scan to be rebooked and a load more blood tests.....more tests but positive. 🙏

0 likes, 4 replies

4 Replies

  • liz06040
    liz06040 joanne90460

    Posted

    Pleased to know they are doing something for you. My consultant just didn't want to know. I sat and cried outside the hospital for ages. Nobody cared. My go is trying his best but it must be quite daunting when you have so many other people to look after. I am lucky I have friends in the service who can give me pointers but it's hard having to give up work.
    • joanne90460
      joanne90460 liz06040

      Posted

      Liz, it's taken years. It started 6 years ago with a suspected stroke then since then my gps just fobbed me off, until 1 actually read my notes and noted I was going back with the same symptoms / complaints. Then I was referred to a consultant again....Make sure your gp read your notes cause mine don't evem now ...the only 1 who did has left!! 

      My specalist is great though, he specialise's in EA and he could see I worse than when I saw him last year. You need to keep going back Hun someone will listen. 

      Work this time around have been great, I want to do something I know I can't do what I did before (well not yet anyway) ...but at the moment I can't go back yet, been nearly 8 weeks now.. 

       

    • liz06040
      liz06040 joanne90460

      Posted

      Bless you, your comments give me some hope. Having awful day today. Terrible facial tingling. Now numbness in the throat (this is new) and getting so depressed but apparently the new medication can have this effect!!! Oh well whatever .
  • susan43558
    susan43558 joanne90460

    Posted

    If they never find a cause.. ask your doctor if it's okay to take these vitamins: b12 in the form of methycobalamin.... b6 in 5p5 form..... folate.... ferrous gluconate.... a probiotic.... cod liver oil.... and vitamin E. This mix fixed my suicidal, atypical headaches. It took about four to six weeks. One can overdose on vitamins, so ask the doc... vitamins are cheep and they are in fruits and vegetables for a good reason!!! Vitamins are a blessing. I take no prescriptions any longer and I used to take migrane meds every day for almost 6 years. The doctors never could help. I prayed for the answer.... everyday... and I kept getting the answer, but I wouldn't listen. I just kept thinking.... vitamins are too simple.... it can't be that... but it was!
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