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12-10-2007, 10:35 PM | #1 | |||
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I have a question for those of you with big brains who have done so much wonderful research into PN. I have idiopathic small fiber neuropathy. In looking back, I can see that I had some intermittant episodes of burning and pain in my feet for some years before it became full blown, but because they came and went I just thought it was arthritis. Then, one evening I got a crushing migraine and had to go to the Emergency room. While lying there in agony, boom -- my toes went numb and my feet started burning and aching to a very extreme level and this has never abated. Have you ever seen anything in your research about migraines and PN? Actually, what I think has happened is that I was in so much pain that something snapped in my brain and it started processing pain input in a faulty manner. Does any of this make sense? Doctors have ignored the sudden onset nature of my chronic pain, which I feel means that they have no idea what it means so they don't want to think about it. I have resigned myself to the fact that I will never find an answer, but I thought that if anyone had any insight it owould be you guys.
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12-11-2007, 06:54 AM | #2 | ||
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Hi Susan, sorry i don't fit into the " big brains " area , but i do know through my personal experience that migrains can come from the spine and so can PN, have you had an MRI of your spine for any compression issues ?
Brian |
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12-11-2007, 06:55 AM | #3 | ||
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Magnate
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But--I wonder if those symptoms are at least partly central nervous system, rather than peripheral nervous system, based.
The problem with neurological disorders, and much of the reason the investigation into their etiologies are so long and expensive, is that problems with the CNS can produce symptoms that can exactly mimic, in intensity and distribution, problems in the PNS. Many now think that migraine is actually a form of seizure disorder. And many seizure categories can produce parasthesas--odd sensations--in areas other than the head by permanently changing the nerve firing patterns in the areas of the brain that correspond to the sensory area singals from that part of the body are processed within. (Interestingly, many of the same meds prescribed for peripheral neuropathy symptoms were originally anti-seizure meds.) Have you had a full EEG done since this all started? |
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12-11-2007, 11:41 AM | #4 | ||
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Magnate
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I agree about maybe going for another nerve conduction test. I know when my pain got higher then did an ssep which is in addition to the nerve conduction when it doesn't show much. I will say I have sudden increase of pain like wide ranges from nothing that happened or I did. I have no idea why and am trying to figure it out. I'm not saying this is your case but I thought I would add. Feel better.
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12-12-2007, 02:48 PM | #5 | |||
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Magnate
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I used to get frequent headaches, but not the kind that Imitrex would help....I can't have additional serotonin....I also get projectile vomitting with the headache.
This is not a big brain answer, however, I have had the same phenomenon that you have had...... also, 'migraneurs' are 'overrepresented' in those with autonomic dysfunction, and autonomic dysfunction is often small fiber neuropathy. Autonomic dysfunction or autonomic neuropathy is a small fiber neuropathy, which can involve gastroparesis or GI motility problems, smooth muscle function disorders, vomitting, cardiac arrhythmias, POTS, vascular related phenomena such as as vasospasm or vasodilitation, hypotention, labile hypertentsion, visual disorders and on and on. It it is an involuntary function, the autonomic nervous system is involved. The autonomic nervous system is peripheral, however, the nervous system is inextricably linked to the CNS. I have not had a migraine like headache in over a year, knock on wood. Hope the info helps. I wish there were better answers. |
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12-12-2007, 05:24 PM | #6 | ||
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Magnate
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But if you mean I've read more and struggled to try and understand more then, maybe I've only got a year or more head start on you?
As for my own onset, it is considered 'middling' meaning technically 'semi-acute'...which further means I was hospitalized five weeks after my toes started to go numb and at the point I could barely walk nor hold a glass of water unless working hard with two hands. As for the pain? At the time I finally got INTO the hospital after 14 hours in an ER wait room, plus another 8 hours in an exam room then getting to a hospital room, I was finally given what I assume were heavy duty narcotics. They did not do one durned thing for the pain I was experiencing, they only slurred my speech to the point no one really tried to listen to whatever I tried to say. Sudden from start to finish wasn't my whole experience tho? The day I was told to go to the ER by my GP was one day in which I felt as if: I'd been dropped into a vat of dry ice for a while; then taken out to thaw; then reinserted into a french fry vat the size of a human; then tossed into a snow bank...lastly left to fend for myself. Nerves were fried, muscles, semi so, and the rest was to be determined. OK so five weeks? The last 36 hours before conceding I should go to the hospital and the time in the hospital were the absolute worst. But, like many who experience this all, I lived thru it. I got a close diagnosis by the ER physician, but not close enough. I got less care from the Neuro on call at the time. Changing neuros saved my life. It was probably GBS but not severe enough to cause respiratory s/e's, Untreated, it became CIDP. IF they'd been quick enough on the uptake and I'd gotten IVIG or Plasmapherisis at that time? I might be a 'past patient' with 'some residuals' now. This is real life tho....but, I am improving in small ways. As for the migraines being connected? I don't think I've read of any direct connections between the two? PN an Migraines...But I DO know that my neuro-opthamologist DID check out this aspect far more thoroughly than I could ever document! I guess what I'm trying to say is that, YOU KNOW what tests you've had. You can get copies of them and then map them out 'a 'la Liza Jane or other sources and then,,, take a look for 'patterns'. IF there are any, such as blood sugar or potassium [too much/little?] then you mite be onto some things. Same with Calciums, Magnesiums, Vite-D's, Vite-B's etc. You get the drift? What really helps YOU is if you can get copies of tests from way before you started having problems...That's your base-line or maybe indicator for possible problems left un-tended. [I know I found heaps of 'border issues' well after the facts?-DUH] We ALL wrestle with the What-if's and IF-only's...but we simply did'nt KNOW! What is done, is so, what WE can do is try to look forward and get ourselves into the best positions to help heal and help ourselves. You have to take control and be in control of how you are cared for! Only you can do that! If we can help, by virture of good/bad experiences, then learn and benefit. Hugs till later! - j |
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12-12-2007, 08:30 PM | #7 | ||
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Senior Member
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Well that would be me,heh,heh...Well working in a ER for 25 years,
I thought laying in those blasted beds caused Migranes.. Women suffer more from Migranes then men,and it has been blaimed on Pantic Attacks which could cause pain in feet??? Glenn is right about the scizure disorders and a eeg is in order. I kind of believe checking into Vasular Disorders,they could effect your legs as well as your head,Talk to Nuero about seeing a Vasular a ultra sound on legs and possible MRI on Brain. Now I talked to my son for a short time.He was in a hurry so I wrote this down,fast. Maybe Mrs. D might help. Magnesiium (5HTP) Feverfew Triggers Fatigue Stress Homonal Changes Alcoholic Beverages Chocolate Peanuts Avacodas Read what C said carefullly,she can explain it more than me...Sjorens S can give me what feels like a Migraine,but it feels like the side of your face instead of the center front. Well I still think lying on that ER could stress you out. Also Susan you have some stress going on....Hugs to you your Son and Daughter, we have ice s. Van still in fix-it,can't get out without out wheelchair,need hair cut,2 new outfits,finally got hold of son and daughterr -in-law in OK,been staying at hospital they work at,will be here tomorow night,as all her family from all over...Dr. Amy willl be speaking at UOM and winning a award. Talk about headache and burning everything. Oh Boy ouch!! |
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12-13-2007, 07:01 PM | #8 | |||
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From time to time, I get what can only be described as stroke-like episodes. It starts with a one-sided migraine and progresses to impaired speech, cognition, AND neuropathy-type symptoms ranging from burning, tingling to flat-out complete numbness in the extremities. This is one of the things the neurologist at Mayo was checking into last week, even though stroke, MS and other things have been ruled out multiple times.
The MRI last week revealed plaques on my brain that weren't there three years ago when I had the last major episode. These aren't MS-type lesions or UBOs. The neurologist believes that they are the result of my chronic severe migraine problem which in my case stems from Sjogren's syndrome. I'm no big brain (in fact, I was surprised the MRI even found one ), but I think migraine and neuropathy can be connected in certain scenarios. The most logical explanation I think would be a central nervous system cause. But proving that, I have no idea how. fanfaire
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Sjogren's, neuropathy, gastroparesis, diabetes, celiac, Raynaud's, hypothyroidism, fibromyalgia, chronic myofascial pain, periodic limb movement disorder |
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12-15-2007, 09:26 PM | #9 | |||
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Many thanks to all of you kind people who have given me input. It is certainly food for thought. If I get up my energy level, I may persue some of the suggestions.... and good luck to all who are suffering form the snow and ice storms.
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