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2nd Visit To Neuro
This was my 2nd visit to a neuro that I didn't particularly like the first time I met him. For people that have kinda followed my story I have been to quite a few dr's since I saw the neuro.
My RN daughter in law went with me this morning. I gave him my skin punch biopsy results and he just shook his head. He said the nerves are dead.......we just have to try and get you out of as much pain as we can and get you off vicodin (he doesn't recommend taking it. My PCP gives it to me) I am currently on 1800 mg of gabapentin a day...he wants to raise that to 2700 over the next 6 weeks.....oh goody....crazy time again while my body adjusts :) So I've decided to use my wonderful PCP Amy and this neuro and just see what happens. I've already had 3 dr's look at my biopsy report and shake their heads....so....I came home, drank 2 big mimosas and accepted it. Done. It is what it is. Small fiber neuropathy. Thanks for listening everyone. Debi from Georgia |
This is so unfortunate.
I really think you should try some acetyl Carnitine ...there is nothing to lose but a bit of money.... There are studies showing it helps severe toxin/drug induced neuropathy. The HIV community has used it successfully for over a decade now, and there are Chemo studies supporting its use for mitchondrial damage from chemo. Start at 250mg a day and work up every 5 days or so to 2000mg a day. Take in divided doses and give it 3 months. Some neurologists today do recommend carnitine, it is just you are not going to them. This paper is from 2007: http://www.ncbi.nlm.nih.gov/pubmed/17696592 Given that you are not getting any healing advice from doctors, you will have to try that on your own. It is very fortunate that the internet can help people find these suggestions. |
Where will I find it in the drug store ?
I haven't tried any supplements yet but what the hay.......just curious where it would be located in the drug store. Like what section. I'll probably send someone to get it. I try not to go anywhere that I don't absolutely have to. Causes too much pain.
Thanks for the suggestion Mrs D. I'll let you know how it goes. The neuro said yesterday that he really didn't think this was chemo induced. But I truly feel if nothing else it escalated the process. I had minor burning in the toes at night prior to the chemo. Then just a few symptoms during chemo (numb tongue and tingling in the mouth....some minor numbness of the feet). It was almost exactly a month after chemo ended that this started. I got up one morning and was like WTH ? Waited 2 weeks before going to PCP and by then I could barely walk. Fun times ! Hope u have a good day :) Debi from Georgia |
You most likely should get it online....
It will be at least 1/2 the cost online. Puritan's pride iherb.com (NOW brand or Doctor's Best) Amazon iherb.com : http://www.iherb.com/Doctor-s-Best-B...?ic=9&flt=0000 Amazon: http://www.amazon.com/Doctors-Best-L...etyl+carnitine About the same price. In stores if you can find it (perhaps at GNC) you will pay at least double if not more $$. Puritan's starts at 250mg... http://search.puritan.com/search?vie...tine&x=14&y=17 I've used both NOW and Puritan's over the years. |
Debi, are they just giving you the Gabapentin, with no other meds? With your pain levels it is customary to give an anti-depressant like Cymbalta along with a pain med. I did not tolerate Effexor and was not comfortable with anti-depressants, so am on 1800mg Gabapentin with MS Contin 30mg 3x day. Like you I have severe SFN along with advanced LFN. Yours was the only other skin biopsy I read about that used the word "devoid" of nerve fibers. Not to say that others aren't as badly off, just that the reports tend to use different terms.
Did the doctor indicate that they would add other pain meds if the increase is ineffective? |
I'll just add that I've had good luck with an older (tricyclic) antidepressant, Nortriptyline, in addition to Gabapentin. And I've read studies indicating that that's a good combination for relief of neuropathic pain. In any case, good luck getting more information AND some relief.
Lynn |
Hey Susanne C :)
As far as the PN is concerned, I take the gabapentin, vicodin (1/2 a pill 4 times a day) and I'm also on 40 mg of paxil a day. The neuro is not thrilled that I am using the viocdin (given to me by my PCP) but didn't tell me not to take it. Said he wanted to get me up to enough gabapentin that I would not need pain meds. Hmmmmm......we'll see. I'm guessing it may takes months to titrate up on the gabapentin to see whether I can't tolerate a higher dose, it helps or doesn't help. I'm guessing then he would try another drug ?
You also are the only other person that has used that term ....devoid of fibers....my 2 punches were 0.0 and 0.06....no matter what scale u use....0 is 0.....lol And ChaucerFan......in my last visit to my PCP on Oct 16, I did ask her to change my paxil but she wanted to wait and see what the 2 other dr's said/or gave me before she makes a change. I'll call tomorrow and ask that she review anti-depressants that work for neuro and maybe change my paxil. It's not working as well as I would like it to. Arms and hands are numb......new symptom...oh goody...gotta go :) Debi from Georgia |
Just a note:
If you do get a change for the Paxil... at 40mg a day you will have to taper off carefully. Paxil is very hard to come off of, and can cause lots of withdrawal. http://www.medicalnewstoday.com/releases/94224.php Mark in Idaho at our TBI forum here has discontinued Paxil high dose. He used the amino acid tryptophan during the taper to minimize discomfort with his doctor's supervision. This is his thread: http://neurotalk.psychcentral.com/sh...ighlight=Paxil Paxil does come in a liquid to help measure out decreasing doses near the end of the taper. |
I had no idea you had to taper off Paxil
Thanks for the info Mrs D....I had no idea u had to taper off the stuff.
I was initially on 20 mg a day but when the SFN kicked in she upped me to 40 mg that does work. Maybe I don't need to change while titrating up on this gabapentin.....going from 1800 a day to 2700....I'm just at the beginning. He told me to increase the night dosage first. Is 40 mg a day Paxil considered high ? Just curious. Thanks.......Debi from Georgia |
I think 40mg of Paxil is a high dose. But that is just my opinion.
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