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Hi,
My fiance has just been temporarily diagnosed (has not yet been confirmed u ntil test results come in) with herditary PN, symptoms being severe and debilitatin burning in his feet and shins. He initially herniated a disc (L5-S1) back in November 2006 and thought that the burning in his feet and legs was caused by sciatica. After 8 months off work and in excrutiating pain, he finally had a discektomy to remove part of the herniation that was pressing on his nerves. His back got better but the burning in his feet worsened. It took doctors here in Canada until September 19th 2007 (2 months shy of a year) to diagnose him with PN. He has been taking Gabapentin since the surgery and this has not helped. The only other drug he has been perscribed to try and alleviate some of the burning sensation is a new drug called Lepryn (I think this is the name?). Otherwise he's been told there's not much else that can be done. He has been off of work for 10 months and can not go back unless the pain is somehow managed. Has anyone had a similar experience or heard of any other treatments that may work?? |
Is this Charcot Marie Tooth?
The reason I ask is that there is preliminary evidence that Vit C can help patients with this:
http://lpi.oregonstate.edu/ss06/charcotmarietooth.html and http://www.cmt.org.uk/index.php?opti...167&Itemid=254 Quote:
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I don't think it is. Judging by the information you gave me it doesn't sound like anything he has. Also, he's been taking Vitamin C, D, and calcium along with glucosamine since after the surgery.
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the data show so far
That the effect of Vit C is dose dependant.
The link I provided suggested at least 3 grams a day. That is why I suggested a doctor's opinion. Lower doses may not penetrate to the cellular level needed. |
Daniellar--
--when your fiance was temporarily diagnosed, did the doctors mention a specific genetic condition, or are they jsut speculating that the situation is "probably" genetic?
There are a number of diagnosable hereditary neuropathies that can be found with genetic testing, but most docs are not that savvy, and the tests are often very specialized (e.g., not done by regular labs). Take a look at this: http://www.neuro.wustl.edu/neuromuscular/time/hsn.htm http://www.neuro.wustl.edu/neuromusc...all.html#hsan1 http://www.neuro.wustl.edu/neuromuscular/time/hmsn.html |
Could your husband get another opinion and the meantime find a pain doc? I have tried many meds like many here and I know neurontin didn't go good with me. I'm off work too and stil finding the right pain relief its so frustrating I do know. I have found my neuros don't do much for my pain issue. They have tried different meds but I feel are more about the dx. I hope in finding a better pain doc and I have been but need to find a better match I will get some relief to function better. I hope the same for your husband.
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Thanks for all of the advice so far. He was just diagosed two days ago, so this is all preliminary jargon from the doctors, however they are setting up an appointment to test his parents on Halloween to see if there are any hereditary genes. I'm not sure what type of neropathy they will diagnose him with but know for a fact that it is not due to diabetes or alcohol/drug abuse.
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There are a lot of other drugs that can be tried for pain relief. Many people get excellent results with one or a combination. some of them are: fentanyl patches, Lyrica, time released Ultram.
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