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    Old 06-26-2009, 10:23 PM   #1
    NeuropathicGuy
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    Desperate for answers on neuropathy: any input appreciated

    Hi all,

    I'm new to the board (just found it today) and am hoping someone here can shed light on some issues I've been having. I'm having the following symptoms:

    * Widespread itching. It's most severe in the scalp but can be felt very noticeably throughout my body (legs, thighs, eyes, shoulder blades). There's no rash although lately I've noticed isolated very small non-itchy bumps that appear for a while and then disappear. The itch is "scratchable" and comes and goes, but is there most of the time.

    * Occasional neuropathy. It mostly manifests as burning/tingling/prickly "mildly electric" sensations in my feet, legs, hands, and arms. I rarely feel it elsewhere in my body. These also come and go but can be felt frequently every day.

    * Occasional cramping in both calves. Usually goes away with rest.

    * Nearly constant dizziness (although I have chronic sinusitis and a deviated septum and these may play some role here).

    I've had the dizziness for several months now but the itching and neuropathy only started about a month ago. It started as localized itching (felt like just dry skin at first) but quickly progressed to neuropathy and generalized itching over the course of about 2 weeks.

    I've had a bunch of blood, urine, and imaging tests done already and all of the obvious possibilities like multiple sclerosis, myeloma, mercury poisoning, thyroiditis, diabetes, HIV, and brain tumor have been ruled out already.

    Do these symptoms sound suggest any particular disorder to anyone? I'm getting desperate for answers and would welcome any suggestions at all. I should also add that I first noticed the itching and neuropathy a few weeks after having an allergic reaction to an antibiotic (Augmentin).

    Thank you so much for any input.

    Last edited by NeuropathicGuy; 06-26-2009 at 10:40 PM.

     
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    Old 06-26-2009, 10:30 PM   #2
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    Re: Desperate for answers on neuropathy: any input appreciated

    I should also add that I've had a number of other presumably unrelated minor health issues over the last few months, including chest pain (costochondritis), anal fissure and hemorrhoids (constipation from antibiotics), and a vitamin D and B12 deficiency. I've been taking vitamin D and B12 supplements however and levels of both are now back up. In fact I got my serum B12 checked yesterday and am now well above the "High" end of the normal range for B12.

    I did get a nerve conduction test done recently and that didn't detect anything unusual. A brain MRI and cervical spine MRI with dye also didn't show anything abnormal aside from some moderate neuroforaminal stenosis in my neck.

    I just don't know if this is some kind of neurological problem, vascular problem, skin problem, or something else entirely. Thanks again!

     
    Old 06-27-2009, 04:21 PM   #3
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    Re: Desperate for answers on neuropathy: any input appreciated

    Your symptoms could relate to small fiber neuropathy (SFN), a type of neuropathy that doesn't show up on nerve conduction tests. It can cause symptoms all over the body. SFN is not so common, and neurologists often discount or overlook the possibility, which my neuro did initially. Or, perhaps your nerves haven't recovered from when you were deficient in B12. Hopefully others on this board who have had experience with B12 (and prediabetes) will respond to you on that. - Ruby

     
    Old 06-27-2009, 10:00 PM   #4
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    Re: Desperate for answers on neuropathy: any input appreciated

    I agree with the SFN idea and don't forget fibromyalgia. I have a great neuro but I also ended up with a rheumy and it was my GP( who's an internist) to put all the pieces together. Good luck and don't give up trying to find answers until your satisfied.

     
    Old 06-27-2009, 10:32 PM   #5
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    Re: Desperate for answers on neuropathy: any input appreciated

    Thanks, guys (or in this case, gals )

    One thing I was wondering, can SFN cause itching that comes and goes? When I started this thread, my scalp was itching like crazy, but today it feels perfectly normal. However I've not got itching in a few other places (for instance my left shoulder blade, plus the middle toe on my right foot but not on any of the other toes -- weird!) that felt normal only a day ago...

    While grocery shopping today I also noticed that my left hand turned purplish and my veins on that hand became very prominent/noticeable for about 5 minutes. That was preceded by several minutes of itchy and tingly arms and fingers. Then it suddenly went away and all I felt after that was kind of a weird pressure in my upper right back, which is still there now. Is this kind of thing consistent with SFN?

    Based on the symptoms I'm guessing it's going to end up being some sort of systemic vasculitis (maybe with kidney involvement that explains the upper back pressure?) or something neurological and subclinical like SFN. I understand that both are thought to be autoimmune in nature, can manifest in my age group (30 years old), and can come on after having an allergic reaction like I did to an antibiotic.

    Thanks for your responses, I'm crossing my fingers for an answer sometime soon, especially because I'm a bit more freaked out now than before that purple hand thing today

    Last edited by NeuropathicGuy; 06-27-2009 at 10:34 PM.

     
    Old 06-27-2009, 10:38 PM   #6
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    Re: Desperate for answers on neuropathy: any input appreciated

    By the way, random question, can anyone here suggest any resources for in-person support groups for this kind of thing? My wife is pregnant with twins, they are due in just a few months from now, and she knows I'm deeply concerned and frustrated with my condition (lately I haven't been able to do a very good job of hiding it). It's a poor time for my illness since these will be our first children and we need all the time/money we can But I have to admit that I'm getting pretty preoccupied and mentally troubled with it and wouldn't mind being able to talk to some people without burdening my wife. Thanks for any input. I'm located in the San Francisco Bay Area in case it matters.

     
    Old 06-28-2009, 09:10 AM   #7
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    Re: Desperate for answers on neuropathy: any input appreciated

    sorry for all that you are currently dealing with here. what i am wondering is if you yourself actually obtained your own copies of every single test result that was done on you, including all the bloodwork studies? believe me when i say that you, the patient do NOT always actually get told about every single finding that actually does show up in any real test you have done. what any particular doc actually 'feels' is or is not really pertinent to your situation and or condition is what they will tell you, only in some cases. i personally have had this happen with me and hear this alot on many different boards here and other sites i go onto too.

    sometimes its just up to us to really take control of our own healthcare, in many different ways. if you have not yet done so, obtain every single test result and go thru them yourself(you may need a good medical dictionary). just to see what you may not have really been told about that did show up as a hard finding, or any of your labs that did come up out of range. i get EVERY single test result and also all medical records too from every single doc/specialist that i have had to see as well. since i have multiple medical problems i just had to find a good way of really keeping on top of everything myself. this really does help in just giving you ALL of the real info in any test result and also when you obtain all docs clinic visit records, you also get their overall 'impressions' of what they feel may be going on with you too. all VERY helpful to you in just finding the real dx of any condition.

    espescially when you are dealing with any level of specialists, these are the most likely ones to only give you bits and pieces of what is actually IN the summary of your MRI reports(or any scans or test results)how 'they' interpret it or how important 'they' see it will dictate whether or not it is or is not important. and unfortunetly that alone really depends mostly on their own level of training, experiences and true knowledge of what YOUR problem actually is. if they do not see this often as opposed to another specialist who does, they will not see it the very same way, you know what i mean? trust me on that one, i went thru this myself with seeing three seperate neurosurgeons for a very rare thing that grew inside my spinal cord. i got three totally differing opinions on this(one extreme to the other) with the very last NS actually being the only one who just had many many years of ongoing experience in dealing with what i had.

    but get ALL of those test results and all records from any doc you have seen for this. if you have had to go to an ER for any treatment, get those records too. every little bit of info generated on your condition is just another piece of the bigger puzzle thats needed right now. it WILL help you in the very best ways right now. hope this helps some. good luck, marcia
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    Old 06-28-2009, 06:44 PM   #8
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    Re: Desperate for answers on neuropathy: any input appreciated

    Marcia, thanks so much. I've actually been doing just that, retaining copies of all of my tests. I actually have the actual films and CDs from my MRIs and CT scans as well as the summary information, etc. I've been perusing them every night looking for possibilities. To be honest I've stopped trusting doctors' "opinions" a long time ago since so many are so nonchalant about what I'm going through. Most of them take one look at me and tell me "you're a normal looking 30 year old guy, there couldn't be anything wrong with you." In fact it took me a long time to even convince my PCP that everything wasn't simply anxiety!

    Anyhow I've been searching for leads all weekend and am convinced that my issues are somehow neurological in nature now, so I will try to set something up with a few neurologists this week. The itching has been getting worse and my legs are feeling progressively stranger so I just hope I find out whatever it is before it's too late.

    Thank you for your response, here's hoping there are better days health wise for all of us here!

     
    Old 06-29-2009, 07:14 AM   #9
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    Thumbs up Re: Desperate for answers on neuropathy: any input appreciated

    I suffered tinnitus (the regular kind as well as pulsating tinnitus). The only thing that worked for me was Chinese acupuncture.

    The neuropathy I suffer is located in my quad muscle area and my heel. In the quad muscle area it felt as though I was being stabbed; it was very painful and I would cry out when it happened, just as one would if they were actually being stabbed. In the heel area it was painful to walk.

    My cousin suggested a topical oil called Neuragen RL. I was skeptical but bought a bottle and it actually took the pain away. It's a bit expensive ($20 or so). I live in Canada and it's available at drug stores but you could do a web search for it ... but I just noticed that there is an advertisement on this website for it. It worked for me.
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    Old 07-10-2009, 03:53 PM   #10
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    Re: Desperate for answers on neuropathy: any input appreciated

    Hi N Guy. Bet it's all from the Levaquin. I had to have Achilles surgery from that poison. Evan joined a class action lawsuit. Good luck.

     
    Old 07-12-2009, 07:59 AM   #11
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    Re: Desperate for answers on neuropathy: any input appreciated

    Have you had any results yet? I was wondering because a lot of this sounds like what I am going through. My head itches a lot especially when I brush my hair or put it up in a pony tail or pull on it lightly. My legs and arms itch too and I have the prickly feeling all over plus pain in my joints etc. I've had blood tests, xrays and am going to make another appointment this week with the Dr to see what else I can do. It's very agrivating and I hate going places which makes me feel down because it seems like I don't do anything anymore. I'm in a lot of pain and not sure what to do. I've tried massage therepy, chiropractors. Am thinking of going to get either accupunture or some kind of natural remedy. Drs don't seem to help me.

    How do you go about getting the xrays from the dr? Do you have to sign a release or something? I've had several done lately and would like to get them so I have them when I go to another Dr.

    Thanks

     
    Old 07-22-2009, 03:58 PM   #12
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    Re: Desperate for answers on neuropathy: any input appreciated

    Hey there,

    Nope, no further results yet, unfortunately. I've all but given up with the doctors and am just waiting and seeing now. Everytime I see the doctors I get some kind of dismissive reply about how it's just anxiety. It's highly frustrating.

    Interestingly the itching and neuropathy seems to be tapering off some, and now I just have tender, achy tightness in my back. It can be felt mostly in the right side up near the right shoulder blade, but sometimes extends down my side to just below my right ribs, and can sometimes be felt in the left side of my back too. I have no idea what it is, the last time I tried to talk to my doctor about it he just told me to take some Ibuprofen because it was only a muscle spasm. Not sure how he knew all that without examining me, but whatever!

    I've now got a nice new issue, an anal fissure that produces rectal bleeding and extremely painful bowel movements. While this one doesn't worry me as much as some of the other stuff that's been going on, it is by far the most excrutiatingly uncomfortable problem, so I guess I'll have to tackle that first before anything else, sigh

    As for getting my records from the doctors, that part is pretty easy, I just tell them before and after every exam that I want a copy of the results, and every single one has been happy to oblige. If it's after the fact already, you can always go to the doctor's office and request them, or if they're not local to you, they will have forms you can fill out requesting that your records be sent to whomever you specify. I have a big binder full of all of mine.

     
    Old 02-12-2010, 12:10 PM   #13
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    Re: Desperate for answers on neuropathy: any input appreciated

    Couldn't tell you what the cause is but I can tell you a possible treatment. My husband has severe neuropathy from medications given for his myeloma. My brother in law (who's chief of pharmacy at a hospital) saw research info regarding Cimbalta as treatment. You might want to talk to your doctor about it. Don't know how or why it works but they say it does (his doctor agreed to try it). Too soon to tell with my husband but good luck!

     
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