Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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did any of you have think you had other bad neourological disease??

Discussion in 'General ME/CFS Discussion' started by Johnskip, Mar 21, 2017.

  1. Johnskip

    Johnskip Senior Member

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    I thought I might have had als msa or Ms because of all my symptoms muscle twitching and cramping that's how this all started
     
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  2. Valentijn

    Valentijn WE ARE KINA

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    Those are common symptoms in ME patients as well. Magnesium helps for me.
     
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  3. TreePerson

    TreePerson Senior Member

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    Oh yes I did. Something else we have in common @Johnskip. My illness seems to have begun in a similar way to yours. At first I thought I might have MS and then focused on MND disease because of the pronounced excessive muscle twitching. Because of this I asked for a referral to a neurologist. The GP wrote "this lady thinks she has motor neurone disease." :( So unsurprisingly I was treated as a rather silly neurotic patient. I didn't have either of those things and over time reading about ME symptoms I became confident that this was what I had.
    How long have you been ill? If it's not long I would say rest as much as you can. Give your body a complete break. This was what I didn't do and if I had my time again I think it would have helped me.
     
  4. Dechi

    Dechi Senior Member

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    Yes. For a long time I was trying to decide between MS and ME. I went to an MS forum and they helped me understand their illness better. Now I know for sure it's ME. Having been diagnosed with it helped for sure also...
     
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  5. Apple

    Apple Senior Member

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    I worry about things like MS as I have neuro symptoms that don't fit ME such as bladder dysfunction, tingling/buzzing/burning sensations, difficulty swallowing, positive romberg test etc. But no-one wants to refer me, so there's not a lot that I can do about it.

    Muscle twitching seems to be quite a common symptom around here. If you have other neuro symptoms, then there is no harm in asking your GP if it's worth getting further tests.
     
  6. jpcv

    jpcv Senior Member

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    How do you take Magnesium? preparations, doses?
    Thanks
     
  7. Jan

    Jan Senior Member

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    My GP thought I had MS, then at a later date that my symptoms pointed to a pituitary tumour. Both resulted in MRIs but nothing found.

    That GP said that she can hardly tell the difference between her MS and ME patients. She also said that some people with ME have mainly neuro symptoms, some mainly fatigue and pain, she said I was unfortunate that I had both. It still wouldn't surprise me if I later find out I have MS due to my many neuro symptoms

    How I miss her, she really cared about her patients.
     
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  8. Johnskip

    Johnskip Senior Member

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    HI Tree yea we do have alot in common feeling like hell sad to say but I have finally noticed about 15 months ago that I finally hit the wall and did not notanything for 4 months went back to weight lifting and felt awful but kept on pushing through trying to get in shape I'm obsessed with my body by the way and then I hit the wall again for 6vweeks now I'm back in gym doing very light activity just to keep me sane! To be honest thinking back I have been living pem for a very long long time but it is def more severe now I'm 50 years old and I just now of I stop moving I think it's all over and of I do stop I still think I'm in trouble
     
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  9. Valentijn

    Valentijn WE ARE KINA

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    I take a single dose of Jarrows Magnesium Optimizer daily.
     
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  10. Techs

    Techs

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    My first referral was to a neurologist who found I had peripheral neuropathy, small-fiber, and autonomic. I'd had symptoms like jerking, numbness, and restless legs for years and years, and the neurologist also attributed my years of other issues such as irritable bowels, GERD, apnea, unresponsive high blood pressure -- even plantar fasciitis! -- to the neuropathy. After ruling out diabetes he said I had fibromyalgia, which he said was pretty much the same thing as small-fiber neuropathy. And that my chronic fatigue was a subset of my FM. (I have no idea whether I have ME, but the FM diagnosis seems accurate.)

    Just one neurologist's opinion.

    Most of the neurological symptoms have proven untreatable (just somewhat manageable, mostly with gaba). But the worst (flu-like) symptom was a persistent overall "burning" sensation beneath the skin that worsened throughout each day. Duloxetine has been fairly effective for that (and only that).
     
  11. Johnskip

    Johnskip Senior Member

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    gaba??? what is that it helps?
     
  12. Techs

    Techs

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    I'm not sure what you're asking. What I was saying is that from my experience anything that boosts gaba may take the edge off neurological outbursts.
     
  13. Webdog

    Webdog Nothing left to say

    Before my ME/CFS diagnosis, I noted how similar my symptoms were to Neuro-Behcet's disease. However, my ulcers have been mild compared to most with this illness. Also, genetically it would make no sense for me to have Neuro-Behcet's.

    In many ways, my symptoms more closely resemble typical Neuro-Behcet's than what I hear described by many ME/CFS patients in these forums. Yet I fulfill the CCC/ICC/SEID criteria and have for decades.

    https://en.m.wikipedia.org/wiki/Neuro-Behçet's_disease
     
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  14. halcyon

    halcyon Senior Member

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    These are all common in ME.
     
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  15. TJM1973

    TJM1973 Maybe tomorrow!

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    For 16 years my doctors had been doing routine bloods, and found nothing. I had seriously started to think I had early onset dementia. As my memory function is so poor, and Brian fog is terrible. I didn't know of the symptoms of ME/CFS. So seemed plausible, as I work with dementia patients. !
    There was a huge amount of relief when CFS was mentioned, when I checked the symptoms!
     
    Last edited: May 10, 2017
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  16. ukxmrv

    ukxmrv Senior Member

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    It was originally thought I had MS and every now and then new doctors bring this up. It's because of the similarity between the MS neurological symptoms and the ME ones.
     
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  17. TrixieStix

    TrixieStix Senior Member

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    Ummmm no Fibromyalgia is NOT basically the same thing as Small Fiber Peripheral Neuropathy (SFPN)!!!! I'm shocked a neurologist told you this. If a person is found to have SFPN is is critically important that the underlying disease process causing the SFPN be identified so that it can be treated thus hopefully stopping or slowing down the progression of the SFPN. Unfortunately in 40% of cases of SFPN no underlying cause can be found, but it has been discovered that mutations in SCN9A, the gene encoding the voltage-gated sodium channel Nav1.7, lie behind some cases of idiopathic small fiber neuropathy (I-SFN).

    "Unlike fibromyalgia, which has had no known causes and few effective treatments, SFPN has a clear pathology and is known to be caused by specific medical conditions, some of which can be treated and sometimes cured."

    https://www.sciencedaily.com/releases/2013/07/130730163138.htm

    In my case doctors have continued to brush my symptoms as simply being "Fibromyalgia" for the past 4 years even though my symptoms fit SFPN to a T. Not once did a doctor (neurologist & rheumatologist) suggest a skin punch biopsy should be done. It's so simple to do! It was only after I recently read about the fact that it is now known that 50% of those diagnosed with Fibromyalgia have SFPN (some of these people have both Fibro & SFPN but some never had Fibromyalgia to begin with).

    I went back to the neurologist a few months ago with the above information in hand (printed out) and demanded a skin punch biopsy be done. It was done last month and the neurologist called me with the results yesterday. Both biopsy samples (1 from my outer hip & 1 from my outer calf) are positive for SFPN and show "significant loss of epidermal nerve fiber density".

    Over the past 4 years of doctors brushing it off as "just Fibromyalgia" the SFPN has spread to my hands, my face, my scalp, and my autonomic nervous system and has affected my ability to walk, stand, sit upright, and use my hands. The neurologist now wants me tested for diabetes (unlikely but need to make sure), and to have do an "Protein Electrophoresis" test and also an "Immunofixation" test (both blood panels).

    Recently I developed even more symptoms and some uncommon blood abnormalities (very low complement C3 and low CH50) were discovered so Sjogren's is being considered and also possibly "Lupus-like illness". And as of this week a rare autoimmune disease called "Relapsing Polychondritis" (RP) is being considered a possibility as well (RP doesn't cause SFPN but it can be secondary to other autoimmune diseases that do cause SFPN). Thankfully I already had an appointment scheduled with a new and more highly trained rheumatologist scheduled for a few weeks from now. The proof of SFPN will hopefully help aid in diagnosis and my hope is that we will figure out what the underlying cause of the SFPN is and once treatment is started that, the progression of my SFPN will be slowed or halted.
     
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  18. Wishful

    Wishful Senior Member

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    It only took me 17 years to realize my disorder was ME/CFS. First it was type IV food sensitivity. Then I realized it must be some sort of chronic neuroinflammation, so rare that no one had encountered it. Every few years, I'd read about ME/CFS, but when I checked the symptoms, I only seemed to have two of the eight listed, so I didn't dig deeper. Then for some reason I checked the Canadian criteria for ME/CFS, and I met that. Likewise the new international criteria. The American criteria were just confusing and misleading for me. Joining this forum filled in a lot of details for me. I knew that I felt worse the day after physical activity, but didn't know there was a name for that (PEM).

    I did consider other diseases that had some similarities, but my symptoms and responses didn't match them well enough to be worth following up on.
     
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  19. pattismith

    pattismith Senior Member

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    It took me only 30 years to figure that I match with CFS\ME, so you did better than I did...
    You have to keep un mind that this syndrome covers probably some subsets of patients with possibly different pathway
     
  20. TiredBill

    TiredBill Senior Member

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    Other than "Yuppie flu," chronic Epstein-Bar, CIFIDS, and other such tags that have been put on this condition? No.

    I was pretty much clumped in the cluster of people who were coming forward here in the States about 1984 right from the beginning. Not like that's helped much.

    Bill
     

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