Johnskip
Senior Member
- Messages
- 141
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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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Those are common symptoms in ME patients as well. Magnesium helps for me.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
How do you take Magnesium? preparations, doses?Those are common symptoms in ME patients as well. Magnesium helps for me.
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 troubleOh 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.
I take a single dose of Jarrows Magnesium Optimizer daily.How do you take Magnesium? preparations, doses?
gaba??? what is that it helps?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).
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.gaba??? what is that it helps?
These are all common in ME.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.
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).After ruling out diabetes he said I had fibromyalgia, which he said was pretty much the same thing as small-fiber neuropathy.
It took me only 30 years to figure that I match with CFS\ME, so you did better than I did...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.