New poster with odd neurological problems...

[dennis11]

This is my first time posting here on this board, where I hope I might find some illumination on my sufferings..

I've full body small fibre neuropathy, my body blazing like an inferno. In trying to find answers I had a spinal tap. I was fine, then three days later emerged a debilitating pressure in my spin and skull. But these weren't the typical post-LP headaches according to my neurologist. He was at a loss to what was going on.

I went ahead with a blood patch anyway, and about 80% of the prolems immediately dissapated. Until, again, three days later. Walking on Sunset Blvd., a lightning bolt hit my brain, I became disoriented, dizzy, the whole right side of my body as if it seized up, constricted, along with muscle spasms in my right glute, contriction on the right side of my throat with a change in my voice.

So we thought stroke maybe first. I had an MRI/a: all clear. Went to a prominent CSF leak doector; no problem there.

Since, my symptoms vacilate as if on a scale, between the full body SFN burning, and the right side of my body constricted. This symptom is always exacerbated by any physical activity. Any straining at all set me on a few days of izziness and diorientaion on my back.

Multiple neurologists and pain doctors at UCLA and Hopkins have no idea what is going on. No medication has really done anything to help. What I'm thinking is some nerve root/s were hit/damaged along the way.

Any replies on any of this would be appreciated greatly.

-- Dennis

[mont]

Have you done a complete hormone and tox profile? Have you given the doctors a complete medical history including all the personal details patients tend to hide such as sexual practices and partners, drug use, trips abroad, etc...Have you been cultured for yeast/fungus/bacterias? Mucus and skin cultures should be done.

If all the common pathologies have been eliminated then finding a rare illness can take some time and require extensive testing.

I hope all goes better for you.
Mont

[joy]

welcome dennis11. I have Idiopathic Peripheral Neuropathy mysellf. I was diagnosed by 98 and it has not stopped progressing and won't it seems. The last time it completed by causing the restof my body that had not burned to start. This time from the knees up to my face. I can wake at times and this will be all burning while the nerves in my head are jumping. But at least this is not as painful as my feet were when those nerves were dying. They are so dead now that I burned a spot on my ankle when riding my brother's 4-wheeler. I did not know he had used it to plow his garden for about an hour before I arrived. I drove it for about 20 minutes and held my foot to close.

I had to go to therapy for several months to heal that burn. I was lucky to get off that fast as some injuries have taken as long as a year.

I am no help here with you I am just griping at this point. It is frustrating to not get any help when you have tried everything that a doctor has suggested.

I want to ask, have you tried any pain meds yet? I was on several of the anti-sezure drugs at the same time when mine first started and they did nothing. I also have a bad hip & baack and it was when a pain doctor put me on methadone for that until he did the injections he wanted to do that I had any relief with my pasin at that time. It did not for the burning but it did quiet the tic-dulorett pains I was having in my head. I have not had any more of that lightning pain since. It was such a relief to not suffer from that any more. My spinal tap did not show anything so no IVIG for me.

I realise you might not be talking about the same lightning pain as mine was just the head & jaw, down my neck. I can't imagine it all on one side. It has to be horrible for you!!

I hope both of you will stay with us here at BrainTalk and will join in anywhere you feel comfortable. There are a lot of helpful people here and I am sorry you need to be here but glad you found us. I really had no one back before I found this group and I did not feel so all alone then.

[cwendyhawk]

Go find you a good chiropractor. Neurologists that i have run into.....aren't worth spit. Chiropractors don't like doctors messing with the spine......the spine doesn't like doctors messing with it. Try a chiro......you have nothing to lose.......but find a good one........don't waste your time on any subpar ones......

Chiros aren't quacks....docs are.......and I say that after going through 8 docs........all who could not figure out what was wrong and thought pointing a finger at me and telling me I was a headcase.....was better than them admitting that they didn't have a clue.....and weren't smart enough to figure it out.

Everything that you learned about the spine......and diseases/health conditions......just put it to the side and keep and open mind when you start reading up on chiros........anything and everything starts with the spinal cord........my chiro knows more than all my docs put together....much more...and heck I have learned a lot through research on my own..and my X-rays showing me getting better is even easy for me to read......good chiros take X-rays at the start...and then 4/5 months later to check progress and my chiro even looks at the X-rays on the computer screen right before he does any adjustments......

If you find a chiro that is worth his spit then he'll test you for heavy metals/Chemical too.....I was blessed with severe heavy metal toxicity/gluten intolerantce/allergies to everything/spine messed up....head way to foward.....bone that connects neck (flat..should be at an angle so the stupid thing is pressing on my spinal cord all the time....killing it).../no curve in neck/and spine curved/out of place. Run from the docs and go to a chiro.....and save yourself.

This is my first time posting here on this board, where I hope I might find some illumination on my sufferings..

I've full body small fibre neuropathy, my body blazing like an inferno. In trying to find answers I had a spinal tap. I was fine, then three days later emerged a debilitating pressure in my spin and skull. But these weren't the typical post-LP headaches according to my neurologist. He was at a loss to what was going on.

I went ahead with a blood patch anyway, and about 80% of the prolems immediately dissapated. Until, again, three days later. Walking on Sunset Blvd., a lightning bolt hit my brain, I became disoriented, dizzy, the whole right side of my body as if it seized up, constricted, along with muscle spasms in my right glute, contriction on the right side of my throat with a change in my voice.

So we thought stroke maybe first. I had an MRI/a: all clear. Went to a prominent CSF leak doector; no problem there.

Since, my symptoms vacilate as if on a scale, between the full body SFN burning, and the right side of my body constricted. This symptom is always exacerbated by any physical activity. Any straining at all set me on a few days of izziness and diorientaion on my back.

Multiple neurologists and pain doctors at UCLA and Hopkins have no idea what is going on. No medication has really done anything to help. What I'm thinking is some nerve root/s were hit/damaged along the way.

Any replies on any of this would be appreciated greatly.

-- Dennis

[mont]

Go find you a good chiropractor. Neurologists that i have run into.....aren't worth spit. Chiropractors don't like doctors messing with the spine......the spine doesn't like doctors messing with it. Try a chiro......you have nothing to lose.......but find a good one........don't waste your time on any subpar ones......

Chiros aren't quacks....docs are.......and I say that after going through 8 docs........all who could not figure out what was wrong and thought pointing a finger at me and telling me I was a headcase.....was better than them admitting that they didn't have a clue.....and weren't smart enough to figure it out.

Everything that you learned about the spine......and diseases/health conditions......just put it to the side and keep and open mind when you start reading up on chiros........anything and everything starts with the spinal cord........my chiro knows more than all my docs put together....much more...and heck I have learned a lot through research on my own..and my X-rays showing me getting better is even easy for me to read......good chiros take X-rays at the start...and then 4/5 months later to check progress and my chiro even looks at the X-rays on the computer screen right before he does any adjustments......

If you find a chiro that is worth his spit then he'll test you for heavy metals/Chemical too.....I was blessed with severe heavy metal toxicity/gluten intolerantce/allergies to everything/spine messed up....head way to foward.....bone that connects neck (flat..should be at an angle so the stupid thing is pressing on my spinal cord all the time....killing it).../no curve in neck/and spine curved/out of place. Run from the docs and go to a chiro.....and save yourself.


There is much truth in what you said.....I have been healed by Chiropractors when specialized doctors couldn't do anything. Its a different approach to medicine and it often works.

Not all doctors are quacks, a good one will send you to a Chiropractor when traditional medicine wont be the most effective.