MS-like symptoms

[kim.der.acquiro]

I was diagnosed with CFIDS, or CFS, in 1987, but I've had it since I was a little kid. I've reently had two positive rhuematoid factor tests (see post Rheumatoid Factor blood tests). I have also been experiencing a progression of MS-like symptoms since 2008 - areas of my body that have electric shocks, electric neuralgia, and a "buzzing" sensation.

For instance, the nerve that runs across the top of my left foot, between the big toe and the next toe, is constantly electrified. When I walk, it feels like I've got an electrified razor blade jammed in my foot. There are 9 areas throughout my body with these symptoms.

I had a brain MRI in 2013 that was negative. The first MS neurologist I went to said I had to see a CFS specialist to see if the symptoms were caused by CFS. I have been on Lucinda Bateman's waiting list since May 2013, but it's unlikely she'll be able to see me any time soon.

I've read lots of Health Rising articles about demyelination and neuroinflammation in CFS, but I haven't come across other CFS patients with these kinds of symptoms. I did have an excellent specialist (in Phoenix) in the early 1990s, but we've (my sister has had CFS since childhood as well) been self-treating since then.

Has anyone else had trouble with these kinds of electric spots and/or "buzzing"? The doctors seem to feel that the 2013 MRI was negative so that's that. I've done some reading on MS forums and there are lots of posts that say "Finally--a diagnosis of MS. I've been having symptoms for 2 years . . .4 years . . .5 years . . .8 years. . . .(even) 10 years."

I am really grateful to Cort and Health Rising. We've been over the treatments with a fine-tooth comb, and we're adding things a few at a time. Keeping fingers crossed that something will make a difference.
Kim D

 

[Who Me?]

@kim.der.acquiro Could you please go back and put paragraph breaks in your post? I am unable to read that much text in one lump because of my neuro cog issues. Really messes up my brain.

It doesn't have to make sense where you put the breaks but after about 3 sentences I can't read anymore.

Thanks.

 

[Cort]

@kim.der.acquiro Could you please go back and put paragraph breaks in your post? I am unable to read that much text in one lump because of my neuro cog issues. Really messes up my brain.

It doesn't have to make sense where you put the breaks but after about 3 sentences I can't read anymore.

Thanks.

I added some.

 

[Cort]

I was diagnosed with CFIDS, or CFS, in 1987, but I've had it since I was a little kid. I've reently had two positive rhuematoid factor tests (see post Rheumatoid Factor blood tests). I have also been experiencing a progression of MS-like symptoms since 2008 - areas of my body that have electric shocks, electric neuralgia, and a "buzzing" sensation.

For instance, the nerve that runs across the top of my left foot, between the big toe and the next toe, is constantly electrified. When I walk, it feels like I've got an electrified razor blade jammed in my foot. There are 9 areas throughout my body with these symptoms.

I had a brain MRI in 2013 that was negative. The first MS neurologist I went to said I had to see a CFS specialist to see if the symptoms were caused by CFS. I have been on Lucinda Bateman's waiting list since May 2013, but it's unlikely she'll be able to see me any time soon.

I've read lots of Health Rising articles about demyelination and neuroinflammation in CFS, but I haven't come across other CFS patients with these kinds of symptoms. I did have an excellent specialist (in Phoenix) in the early 1990s, but we've (my sister has had CFS since childhood as well) been self-treating since then.

Has anyone else had trouble with these kinds of electric spots and/or "buzzing"? The doctors seem to feel that the 2013 MRI was negative so that's that. I've done some reading on MS forums and there are lots of postts that say "Finally--a diagnosis of MS. I've been having symptoms for 2 years . . .4 years . . .5 years . . .8 years. . . .(even) 10 years."

I am really grateful to Cort and Health Rising. We've been over the treatments with a fine-tooth comb, and we're adding things a few at a time. Keeping fingers crossed that something will make a difference.
Kim D

I don't think this is uncommon actually in ME/CFS and I'll bet its common in FM.

I'm having this issue (not as bad) on the top of my thumb. I also had strange numbness problems at one time that sent me to neurologist, an MRI scan and no MS diagnosis. I think a lot of us fall between the cracks and stay there. I imagine that some will progress to MS but I don't see that a lot either. I can't remember a single person who said they had ME/CFS or FM and later were diagnosed with MS. I'm sure it happens but I think it's problem.

Corinne has numbness in her feet and legs and a couple monoclonal antibodies but not enough to diagnose her with MS.

I think those problems could be due to small fiber neuropathy- which is very common in FM.

 

[Merida]

I attended a day MS conference at a local medical center just to see what was up with them. There were research experts there. I realized from lectures and talking with patients that by symptoms alone the CFS/FM and MS groups seemed inseparable. Plus, one of the patient leaders mentioned the neck issues that MS people have. I mentioned my observations ( ie couldn't tell CFS/FM patients from MS patients by symptoms alone) to one of the experts. He looked at me like I had said the Earth was flat. Oh well !

I went to one neurologist who was a spinal injury specialist, and, interestingly, he prescribed 4 amino-pyridine, an MS drug. It apparently helps with demyelinization. Had too much nausea with it at higher doses.

There is an important book: The Downside of Upright Posture by Michael Flanagan, DC - a neurological chiropractor and expert in mammalian/human skull structure and fluid mechanics of the brain. He asserts, with evidence, that Alzheimer's, Parkinson's, and MS have anatomical causes which disrupt brain circulation and drainage. He also has a great blog.

Thank you, Cort for keeping up with all of this and for sharing your experiences.

 

[Tammy7]

Kim....................I also had an excellent specialist in Phoenix in the 90"s.........Dr. Stoff was his name. He was great and I wish I had the results of all the specialized tests that he did (they got ruined in a flood). I was sure I had MS at one time............anyway one of the tests that he did showed antibodies to the myelin sheath...........and there shouldn't be any of these AB's. My myelin sheath was being attacked. As a result of that attack..........any touch on my skin feels "muted"...........that's the only way I can describe it. Luckily for me.........whatever it was that was attacking...........stopped. I have been to plenty of neurologists and never was diagnosed with MS. I can't remember if I had those kind of shock feelings you are talking about............but I have had plenty of very strange neurological symptoms.

 

[goldenapple]

I have other neuron issues that made me suspect MS in myself (symptoms triggered and made worse by heat, dropping things, tingling in fingers, and severe tremors). I had an MRI of my brain and the nuerologist called me and was like, no leasions you don't have MS. And that was that until the tremors sent me to the ER and then my rhuemtologist asked if there were leasions on my spinal cord. Turns out I had a crappy neurologist (he retired a few months after I saw him) as there were several other tests he should have done and now I have to wait 13 months to see another one. My point is that MS does have a strong diagnostic criteria so if you see a good neuro you should be able to get a definitive yes or no once all the tests are done

 

[sharon van isle]

I was diagnosed with CFIDS, or CFS, in 1987, but I've had it since I was a little kid. I've reently had two positive rhuematoid factor tests (see post Rheumatoid Factor blood tests). I have also been experiencing a progression of MS-like symptoms since 2008 - areas of my body that have electric shocks, electric neuralgia, and a "buzzing" sensation.

For instance, the nerve that runs across the top of my left foot, between the big toe and the next toe, is constantly electrified. When I walk, it feels like I've got an electrified razor blade jammed in my foot. There are 9 areas throughout my body with these symptoms.

I had a brain MRI in 2013 that was negative. The first MS neurologist I went to said I had to see a CFS specialist to see if the symptoms were caused by CFS. I have been on Lucinda Bateman's waiting list since May 2013, but it's unlikely she'll be able to see me any time soon.

I've read lots of Health Rising articles about demyelination and neuroinflammation in CFS, but I haven't come across other CFS patients with these kinds of symptoms. I did have an excellent specialist (in Phoenix) in the early 1990s, but we've (my sister has had CFS since childhood as well) been self-treating since then.

Has anyone else had trouble with these kinds of electric spots and/or "buzzing"? The doctors seem to feel that the 2013 MRI was negative so that's that. I've done some reading on MS forums and there are lots of posts that say "Finally--a diagnosis of MS. I've been having symptoms for 2 years . . .4 years . . .5 years . . .8 years. . . .(even) 10 years."

I am really grateful to Cort and Health Rising. We've been over the treatments with a fine-tooth comb, and we're adding things a few at a time. Keeping fingers crossed that something will make a difference.
Kim D

I was diagnosed with CFIDS, or CFS, in 1987, but I've had it since I was a little kid. I've reently had two positive rhuematoid factor tests (see post Rheumatoid Factor blood tests). I have also been experiencing a progression of MS-like symptoms since 2008 - areas of my body that have electric shocks, electric neuralgia, and a "buzzing" sensation.

For instance, the nerve that runs across the top of my left foot, between the big toe and the next toe, is constantly electrified. When I walk, it feels like I've got an electrified razor blade jammed in my foot. There are 9 areas throughout my body with these symptoms.

I had a brain MRI in 2013 that was negative. The first MS neurologist I went to said I had to see a CFS specialist to see if the symptoms were caused by CFS. I have been on Lucinda Bateman's waiting list since May 2013, but it's unlikely she'll be able to see me any time soon.

I've read lots of Health Rising articles about demyelination and neuroinflammation in CFS, but I haven't come across other CFS patients with these kinds of symptoms. I did have an excellent specialist (in Phoenix) in the early 1990s, but we've (my sister has had CFS since childhood as well) been self-treating since then.

Has anyone else had trouble with these kinds of electric spots and/or "buzzing"? The doctors seem to feel that the 2013 MRI was negative so that's that. I've done some reading on MS forums and there are lots of posts that say "Finally--a diagnosis of MS. I've been having symptoms for 2 years . . .4 years . . .5 years . . .8 years. . . .(even) 10 years."

I am really grateful to Cort and Health Rising. We've been over the treatments with a fine-tooth comb, and we're adding things a few at a time. Keeping fingers crossed that something will make a difference.
Kim D

Hi Kim hope this finds you on a good day.

My diagnosis ME plus. I have experienced similar ms-like symptoms too. I was having vascular or nerve type cramps on the top of my foot. They were two minutes long and upwards of 50 times a day, so not constant but daily. Neurologist and MD didn't know what or why so I thought I had to learn to live with excruciating pain.

Well after 6 long months the cramps went away after having my right thyroid removed due to a goiter. What I thought was an unrelated surgery, my MD said the thyroid must have been pushing on the parathyroid gland. Apparently, a malfunctioning parathyroid gland can cause hand and foot cramps.

To your knife jabbing sensations in your feet, I also had. I went to MD about it describing feelings of walking on knives or broken glass upon standing and when walking on them for a few minutes. He said sounds like peripheral neuropathy. So experienced it for a year. It began after starting Benztropine which was prescribed for dystonia like movement disorder. When it became ineffective I went off of it and the peripheral neuropathy symptoms went away.

I am now seeking a diagnosis for left sided facial pain that started after a pulled jaw muscle that happened almost two years ago.

Does anyone out there get sudden neck weakness to the point where you need to let it hang when walking or sitting upright for too long? Could it be related to my POTs or ME? It also aggravates my blepharospasms while trying to look forward.

Also i have had several episodes of temporary paralysis (without the numbness). The longer the episode the longer the rehab. Episodes are from one to ten days long. Rehab is a week to a year. Legs are jelly inside but no numbness of the skin. Testing many months after the fact with MRI of brain and partial spine, evoked potentials and EMG were mostly normal. Thoughts?

 

[ladybug64]

Kim: I have the same "buzzing" (but whole body) as well as CFIDS, Lyme and Co's and Mold toxicity. Mold toxicity destroys the myelin sheath and results in lots of neuropathy. I, too, have MS like symptoms but Brain MRI doesn't show it. In the course of treating, I have met many others from all over the U.S. & Canada who have the "buzzing" also--we all have genes that make us unable to detox mold. Have you ever done the Realtime Labs Mold test? A good resource on this topic is Dr. Shoemaker's website.

Tammy7: could it be your "buzzing"/neuropathy sysmptoms cleared because you moved out of or stopped being exposed to a moldy environment on a daily basis?

 

[Tammy7]

Tammy7: could it be your "buzzing"/neuropathy sysmptoms cleared because you moved out of or stopped being exposed to a moldy environment on a daily basis?

First.............the "muted" feeling I have has been permanent...........I assume that my myelin sheath is no longer being attacked because if it was .......I would think that my symptoms would be worsening or progressive...............but to answer your question I do not think I ever lived in a moldy environment......not that I was aware of anyway.................I live in a very dry environment.

 

[Merida]

Hi Kim hope this finds you on a good day.

My diagnosis ME plus. I have experienced similar ms-like symptoms too. I was having vascular or nerve type cramps on the top of my foot. They were two minutes long and upwards of 50 times a day, so not constant but daily. Neurologist and MD didn't know what or why so I thought I had to learn to live with excruciating pain.

Well after 6 long months the cramps went away after having my right thyroid removed due to a goiter. What I thought was an unrelated surgery, my MD said the thyroid must have been pushing on the parathyroid gland. Apparently, a malfunctioning parathyroid gland can cause hand and foot cramps.

To your knife jabbing sensations in your feet, I also had. I went to MD about it describing feelings of walking on knives or broken glass upon standing and when walking on them for a few minutes. He said sounds like peripheral neuropathy. So experienced it for a year. It began after starting Benztropine which was prescribed for dystonia like movement disorder. When it became ineffective I went off of it and the peripheral neuropathy symptoms went away.

I am now seeking a diagnosis for left sided facial pain that started after a pulled jaw muscle that happened almost two years ago.

Does anyone out there get sudden neck weakness to the point where you need to let it hang when walking or sitting upright for too long? Could it be related to my POTs or ME? It also aggravates my blepharospasms while trying to look forward.

Also i have had several episodes of temporary paralysis (without the numbness). The longer the episode the longer the rehab. Episodes are from one to ten days long. Rehab is a week to a year. Legs are jelly inside but no numbness of the skin. Testing many months after the fact with MRI of brain and partial spine, evoked potentials and EMG were mostly normal. Thoughts?

Sharon,
Your information is very interesting. Thank you for sharing. I have been diagnosed with tethered cord syndrome - and it does produce the 'walking on glass' type foot pain. It is associated with toe-walking in younger people and with high arches. I just don't know how much value this dx is, as the surgery is very iffy from all I have heard. Plus, when I can get my sacrum/pelvis is better alignment, my symptoms ease.

I gave other posts how the sacrum/pelvis is related to the neck/cranial issues - according to osteopaths and sacro-occipital chiros. But, personal experience tells me, yes, the pelvis absolutely influences the neck. I have had weakness, strange feelings like head is on an unstable 'pole.' Lots of neck issues.

Recently I have learned about vertebral artery syndrome and this may be important. I don't know of anyone who has been evaluated for it. It may be more common in people with scoliosis - even mild scoliosis - as the neck vertebrae may twist and distort.

This can be a big problem for CFS flow from the brain ( yes, I had CINE MRI flow study with neurosurgeon -very abnormal ). But also I just learned that two of the main arteries to the brain ( vertebral arteries) thread through little holes in the side section of the cervical vertebrae. These arteries are wrapped in a sympathetic nerve ( part of the autonomic nervous system) that originates from the sympathetic nerve ganglia in the neck.

So, any distortions or misalignments in the neck vertebrae may influence not only spinal fluid flow from the brain, but also blood flow to the brain and autonomic nervous system dysfunction. This is important.

Some people have had some success with NUCCA chiropractic. These are specially trained chiros who gently move only the top neck vertebra when it is misaligned. I could feel my neck and symptoms change with every little gentle movement. This helped me, but I had trouble holding the adjustment.

Having said all of this, my original injury that caused all of this was from a chiro who twisted and pulled on my neck ( and pelvis.) with a lot of force. So dangerous.

i suspect that the unifying factor for many, many of us may be spinal fluid drainage/flow in and out of the brain and disturbances in this vertebral artery and accompanying sympathetic nerve. People with scoliosis may be more at risk for disturbances in this area.

One more thing, Sharon. Changes in my jaw ( and I tried several jaw/mouth) appliances absolutely affected my neck. Yes, I have had facial pain, with odd tingling down cheek and very painful teeth.

The sacro-occiptial chiros state, "One of the most important aspects of normal cranial function is the position of the jaw." The teeth come together every time we swallow - 2,000 times a day. But what causes the jaw deviation in the first place ? These experts on structure/function state that the TMJ and sacro-iliac joint in the pelvis both work in conjunction with each other. So, problems with the stability of the sacrum/pelvis can distort the TMJ.

This sounded crazy to me at first. Then I spent years working with a great sacro-occipital chiro. I observed exactly what they asserted. When just my pelvis was worked on, my neck and jaw could change position.

I think I am sounding like a broken record. However, so few doctors/researchers are even thinking about structure/function. A rheumatologist at Rush Universtity, Dr. Katz, did publish the fact that the neck curve in fibro patients is abnormally straight. Yes, the sacro-occipital chiros talk all about this - and explain the exact mechanism - beginning with an unstable sacrum.