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Old 09-20-2007, 01:08 PM #1
daniellar daniellar is offline
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Frown Help

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??
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Old 09-20-2007, 01:46 PM #2
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Lightbulb 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:
Neuromuscul Disord. 2007 Mar;17(3):248-53. Epub 2007 Feb 15.Click here to read Links
Ascorbic acid inhibits PMP22 expression by reducing cAMP levels.
Kaya F, Belin S, Bourgeois P, Micaleff J, Blin O, Fontés M.

INSERM UMR491, Centre de Thérapie Génique, Génomique et de Biothérapies (CTGGB), IPHM-IFR125, Faculté de Médecine de la Timone, 27 bd Jean Moulin, 13385 Marseille cedex 5, France.

Charcot-Marie-Tooth [CMT] syndrome is the most common hereditary peripheral neuropathy. CMT1A, which accounts for 50% of all CMT cases, usually results from triploidy of the PMP22 gene. Preclinical trials using an animal model show that disabled mice force-fed with high doses of ascorbic acid partially recover muscular strength after a few months of treatment, and suggest that high doses of ascorbic acid repress PMP22 expression. In this study, we demonstrated that ascorbic acid represses PMP22 gene expression by acting on intracellular cAMP levels and adenylate cyclase activity. This action is dose dependent and specific to ascorbic acid, since repression is not observed after treatment with other antioxidants. The new properties of ascorbic acid are discussed, along with the implications of these findings for CMT disease treatment.

PMID: 17303424 [PubMed - indexed for MEDLINE]
Given that Vitamin C is well tolerated, you might discuss this with doctors and see if it is worth a try.
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Old 09-20-2007, 02:51 PM #3
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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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Old 09-20-2007, 04:07 PM #4
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Lightbulb 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.
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Old 09-20-2007, 04:35 PM #5
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Default 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
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Old 09-21-2007, 09:42 AM #6
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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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Old 09-21-2007, 02:57 PM #7
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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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Old 09-21-2007, 09:38 PM #8
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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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