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#1 | ||
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Member
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I really would like to know if you remember the exect moment when your PN had started? what was the reason? the situation? or maybe it was a slow process and you can't put your finger on the exect moment.
For me - it started one day, at work - I gave a presentation and in the middle of the presentation I felt this tinglings in my toes. I remember that I noticed it and one of my coulegues (mistake...) even told me that I looked sick. No special event before it, no virus, no any trauma. It started just like that... (In backgraund - there are new chemicals that I was exposed to, but no one of my doctors made the conection...) I would like to read your stories. (I know that my questions seems a like, but all this is very new to me and I can't stop thinking of my new situation. your support and coming to know you better help me a lot. I feel that you are my new friends and my "supporting family") have a good day |
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#2 | ||
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Senior Member
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Then i want to remember,i was aways having anybody i could
body tackle,i would. Please rub my feet or my legs,the kids were young still and easy to catch. Ha. Than it was those alfull cramps and spams. To don't touch them it hurts to bad. I think when your on your feet for a living,who really knows...I can think of it now. And i hate it. ![]() |
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#3 | ||
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Member
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IN October of 2001 as i was starting to get respiratory infections and having trouble with coughing and shortness of breath and wheezing, i noticed that my big toe was numb. I thought it was an ingrown toenail doing it. I continued to have many respiratory infections and the numbness spread to entire balls of feet by 2003.
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#4 | |||
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Member
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Slow process and can't put my finger on the exact time frame. I was so sick for so long with my intolerance's that I didn't realize was the problem. I had aches and pains for years--I remember trying to learn to crochet, my hands hurting so much, and my mother saying it was just because I wasn't used to it and the more I worked with it, the easier it would become. Believe me, it took me over 5 yrs to crochet this lap afghan and it is the only one I ever did. She used to tell me that I was too young for so many aches and pains, that I complain too much and that was in my late 20's, early 30's. By that time I was already in true malabsorption, so I am sure much of the "aches and pains" were my neuropathy in progress. My hip pain worsened in 2001, I remember it would come into my dreams and I would wake in terrible pain with tears running down my face, still do sometimes.
I think it is really difficult for some of us to pinpoint when it started. I think it sneaks up on us, we never saw it coming. It was minor little annoyances at times that we didn't give a second thought to at the time.
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Deb We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right! |
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#5 | ||
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Magnate
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--almost to the minute; the start was that acute.
I was in the shower in the early afternoon of April 12, 2003, and began noticing a strange tingly/numbness between the fourth and fifth toe on my right foot. Within hours, it had spread all over the foot as a searing, burning pain. In three days, I noticed it in my hands; by day ten, when I was going in to see my first neurologist, it was all over my body, head to toe, with the exception of a small area around my larynx (which has never been affected--no idea why, but at least I can use it as a "normal" baseline). The progression was so fast I could actually feel it at times going up my side, climbing my face, going across my lips--incredible sensations such as I had never experienced anything like before. Much of the rest of my story is well-known here--the extensive in and out-of-hospital testing, all of which was negative/normal; the parade of neuros in Staten Island who were stumped; my taking Neurontin, which did work to moderate the symptoms enough for me to start doing research (at the onset I couldn't eat, sleep, tolerate clothes or bedsheets), my beginning to drive my own further testing protocol and my visit to Cornell-Weill, where skin biopsy finally showed I had an extensive small-fiber neuropathy, and the slow and painful process to recover at least some fiber density and function, and to lessen symptoms (it appears that I was the vicitim of a post-infectious molecular mimicry autoimmune process, but there's never been any "direct' evidence of that; it's been likened to a small-fiber sensory Guillain-Barre, but at least it appears to have been monophasic). |
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#6 | |||
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Member
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HI Rina!
I can't put my finger on an exact day. I started feeling very tired all the time and had achiness for over a year. But I have so many other health issues that I kept putting the achiness on the back burner. Then finally this past Feb. I was hurting SO bad that I saw my reg. dr. and told him about it. He thought I was depressed! So he put me on Cymbalta, and that caused major stomach burning so I saw him again a few days later......in tears! I'm sure he thought I really was depressed when he walked in the exam room and I was sitting there bawling like a baby! But I was hurting! He said I needed to see a specialist so I made an appt with a Rheumatologist.....and he's the greatest! He did MANY tests and blood workups and then the nerve/muscle biopsy and diagnosed my Chronic Axonal Neuropathy. I wish I could put my finger on an exact date and time it started. I've always wondered when it really started.
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. Dx'd with Spinal Arthritis 09 Upper and lower Spinal Cord Stimulator surgery Replaced IV port 09 Had surgery for IV port for IVIG infusions 07 Halo 360 & 90 procedure for Barrett's esophagus Dx'd Chronic Axonal Neuropathy & Myopathy June 07 Dx'd IC May 2006 (after suffering for 25+ yrs!) Gall bladder surgery Aug. 2004 Gastric Bypass Dec. 2004 Dx'd: Barrett's Esphogus July 2004 Bladder surgery 2000 Dx'd: IBS 2000 Hysterectomy (fibroids) 1999 Laminectomy 1989 Dx'd: Degerative Disk Disease 1989 Cyst removed from my ankle -twice 1986 |
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#7 | ||
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New Member
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Interesting question. I basically had two revelations. The first was after a bark scorpion sting on the second toe of my left foot. I was numb from the waist down for 24 hours. Then the numbness subsided but I recognized that the sting area and the adjacent area were still numb -- a year later. Then, I started having a lot of tingling, zaps, and other neurological issues and had it all checked out. Discovered that the strange feeling in the back of my legs (especially in the shower) were known as "socks" and that the sensation I was experiencing when I started to walk was all part of the neuropathy. Click! It fell together.
Good question - thanks for asking. |
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