Has anyone been referred.to neurosymptoms.org ? Ive has MS like smptoms but clear MRI for.last 6 years, CFS dx in 2003

I have mobility problems due.to leg weakness/numbness, BPPV (positional) vertigo, balance problems, and muscle spasms in thighs and arms at times. I also get jabbing pains in toes or.fingers, and burning needle sensation around ribcage/back. I have also had episodes of jabbing.electric type pain in eye area with flashin lights.

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  • I have lived with ME... Myalgic Encephalomyeltis ... since the 90s and was diagnosed in 1995. I have many of the symptoms which you describe..particularly the leg weakness/numbness which substantially reduces my mobility. Might be worth investigating... although Me does not show on an MRI... mine was clear also. Do you suffer from acute fatigue???

  • I have fatigue daily everything is a struggle but if I try to hoover it.zaps.me.and.I have.to.sit.down and take breaks. When I was.working fatigue.affected.my.cognitive skills and bt the.time I drove home I could barely stand on coming through the.door. However, resting up before an outing does not really help.me as physical weakness/fatigue kicks in say.after.sitting having.coffee. I rest up but do not have.the need to.sleepfor.long periods but do feel.like a nodding dog at.times fighting sleep. Have been trying to.sum up.energy to hoover for.last two.weeks but have just been sweeping dog hairs.up.:0(

    Do you experience electrical.jabbing pains in your.feet? or get.trembli.g when fatigued? I also have essential.tremor in hands and head/neck which.started.at.beginning of.ilness. Head tremor noticeable when fatigued, its like my neck.cannot support my head and I havea tremor.which kind of.jerks.my head back when at worst. Recently had.dix.halpike and epley.maneouvre.for.vertigo which.has.helped but I still have balance problems. When.sitting I feel.like (and am) falling back - I have.to hold onto table until my head/shoulders steady. I have.a.positive romberg test in that I fall to.right side on heel to.toe test or on standing with feet.together.and.eyes.closed.

    Im glad that you.have.advised.me of.leg numbness.and weakness. There is so much ignorance with some doctors for.making us.feel.as.though it is in our heads especially.when.tests.come.back normal. Thanks for.your.reply.

  • Hi Bue Eyes,

    I also suffer from all the symptoms you describe. I was diagnosed with M.E in December 2011. I suffer from all over body spasms and twitches in fingers and toes. My mobility is substantially affected with leg weakness, especially in my left leg. I can walk short distances (10m) with the use of sticks/crutches. Anything further i have to rely on my wheelchair, an assisted one as i dont have strength in my arms for a self propelled.

    I spent ten days in hospital on an acute neurological unit. Had numerous tests which all came back nearly normal apart from 2 which showed i had to much vitamin b12 in my body and hyperexcitability in my legs. Was told the hyperexcitability in my legs was to insignificant for them to worry about but they seemed not to care how much it was affecting me.

    So many doctors and neurologists do not believe M.E. exsists and as you say they make you feel like you are making your symptoms up. Grrrrrrrrrrrr so frustrating when you know there is something wrong with your body.

    I havent got better from any of my symptoms, i have just learnt to adapt to them.

    I did the lifestyle management programme, to no affect.

    I now feel after finishing the programme i have been 'left' to deal with this condition on my own. Its a case of managing your symptoms to the the best of your ability :( as i have been told there is no miracle cure just basically learn to live with it.

  • Hi: I had the same symptoms you have described for years, I had the MRI's nothing could be seen on them that suggested MS, but then I found a new medical team who read through my 10 years of medical history and they diagnosed me with fibromyalgia, I would look into that. I've been prescribed gabapentin which has helped quite a bit.

  • Hi Cheri, I think I may have undiagnosed fibro as I have a lot of pain. Started mainly as knee pain and muscle spasms in right arm but also right shoulder. Was already on 50 diclofenac but 5 years ago put on 30 dihydricodeine for nerve pain after attending hospital after 111 call for pain I. Arm.

    However I have times if I do more that it takes 2 hours for pain meds to kick on. I also have gone through nights when awake with leg pain - so I stay up late to take medication before I go to bed.

    This sometimes means I have to put up with pain as trying to spread medication through day. Difficult if you get up with back hip pain (forgot to mention that) that you can't stand.

    I askeddr about gabapentin but he said I'd need to have sleep assessment to confirm restless legs 🙈

    At the moment I now have a weak right arm with pain muscle spasms into fingers and hand and nerve pain in elbow after having cortisone injection for tennis elbow.

    I also have pain in right side under arm at side of breast had it for years but it's now waking me up - so being referred to breast clinic . The pain is in lymph node and on rib cage . But in 2009 was the start on enlarged lymph glands in face, collarbone and under Jawline. Where I am I just get told it's just MUS - multiple unexplained symptoms - keep taking pain killers .

    Fingers crossed that after breast clinic appointment they will do ultrasound of underarm lymph nodes - and newer says could possibly refer me to multiskelletal (or something) for assessment - fingers crossed as my quality of life has deteriorated this past few years. I have to push myself to do anything - sitting in pjs atm but need to do stuff in kitchen today . Did u get gabapentin from dr or neurologist consultant? Or referred to rheumatologist for fibromyalgia diagnosis?

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