Neurologist - Thanks

Posted , 5 users are following.

Hi everyone,

Many thanks for all the responses, they have cheered me up. I can now see I am definitely not alone.  It is a very hard road we have to go down. I will give the Physio a try if G.P offers it, I can always stop if it makes things worse.  I am trying to build up muscle strength even when bed bound by stretching and doing leg exercises when I am able.  I do walk up and down inside the house when I can just to retain mobility in legs, and potter about to help arms.  I do find the isolation during the day gets me really down, but I guess I am one of the lucky ones as I do have a husband who comes home after work, albeit he struggles to understand the condition.

Once again many thanks for your replies and wish you all the best. Txx

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  • Posted

    My 40 year old stepdaughter with two children of six and four has really struggled since she was at high school sometime falling asleep at the dinner table.

    Her Mum has been a tower of strength to her by often spending a week at a time with her to help out as sadly her husband has problems of his own and cannot understand.

    Have you considered the B12 Deficiency possibility?

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  • Posted

    Hi Tina

    Hope you don't mind me messaging you, but I think that's all you can do, potter about the house. Try and get up reasonably early and set yourself some tasks, e.g. wash up, make the bed etc.try some physio, I do mine when I feel my muscles are weak but not when I can't do them so don't get pushed into GET. Even standing for a couple of minutes might be all we can do some days. I sometimes use a DVD of chi gong exercises that slowly help build up wasted muscles

    it's such an awful illness isn't it and even though my husband is very supportive I heard him the other day on the phone say well you know she gets tired with her ME good grief I thought!!

    take care


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    • Posted

      Just read this on another forum:

      "So M.E is almost 100% unlikely to have been what I have been diagnosed (un) treated for since 1990. What is almost certain is that I have P.A. They say that in space no one can here you scream well they can't hear you on planet earth either.

      Questions: Should my GP have taken notice of my Macrocytosis, which as far as I'm aware was first mentioned 15 years ago. Is a diagnosis of acute gastritis in my past history another warning sign of B12 deficiency/PA?

      Would I be better off having infusions of B12 if I have been subject to this damage without treatment for 30 plus years? I am currently so fatigued I'm struggling to sit up for long. My feet don't belong to me and I'm having extensive pain on right side of back rib cage as well as lower back in mornings. My tummy is constantly bloated, I wake with indigestion in the middle of the night and nausea. I struggle to focus my eyes are blurred and my ears are ringing. I am also very hot in the middle of the night, skin feels hot and my tongue is red raw and sore.

      I'm not feeling any benefit at all from my b12 every other day on the 15 th shot. Is it just going take forever or am I never going to improve? I'm not ashamed to admit I have actually felt frightened by how badly I feel. I'm scared and scared for my kids.

      I have had an answer from my MP and I'm going to see her next Friday. Hopefully I won't need the megaphone I've hired"



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