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Old 08-19-2010, 06:49 AM #31
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--I can vouch for Mike as well; we met through having the same practice--Cornell Weill Center for Peripheral Neuropathy--dealing with our conditions, and then I got to know him when he volunteered at a YMCA on Staten Island, where I used to live. Mike will tell you very specific things about how the appliccation needs to be phrased, centered around the "functinal disability on your worst day" concept. I've referred a number of people to him over the years, most of whom did get through on the first try (not that they didn't have real disabling situations).
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Old 08-19-2010, 07:55 AM #32
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I can vouch for Mike, as well.
He helped me when I needed advice
about my son's SSDI after his spinal cord injury accident.
I've referred others to him.
He's an invaluable resource for SSDI advice.
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Old 08-19-2010, 02:32 PM #33
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Thanks Glenn and Bob B - I was hoping some of you would back me up on Mike. And Sarah Mae, Glenn and Bob are two of the most prominent and knowledgeable members on this site. MrsB is another but she is on vacation now.

I know what I said about Mike sounds like it's too good to be true and in many instances it is. But in Mike's case it's all very true and there is no telling how many people he has helped over the years and he does not charge anyone a red cent for his expertise.

Call him Sarah Mae - you've got nothing to lose.
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Old 08-19-2010, 03:08 PM #34
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Sorry for having to make this comment, but how did this thread get so far afield?

May I suggest that in future, one start a new thread when the topic takes a sudden and unexpected tack.

Thanks all.

Sheltiemom
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Old 08-19-2010, 03:57 PM #35
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Quote:
Originally Posted by DanP View Post
Thanks Glenn and Bob B - I was hoping some of you would back me up on Mike. And Sarah Mae, Glenn and Bob are two of the most prominent and knowledgeable members on this site. MrsB is another but she is on vacation now.

I know what I said about Mike sounds like it's too good to be true and in many instances it is. But in Mike's case it's all very true and there is no telling how many people he has helped over the years and he does not charge anyone a red cent for his expertise.

Call him Sarah Mae - you've got nothing to lose.
I told my mom about what you said, and she was pretty excited about that. We definitely don't have money for a lawyer... but we are both a little worried that if we appeal with his help and get denied, that we won't get a second appeal and will have to start all over. We really need this now--not years from now. I don't have enough to pay my bills past December, if even that long. But I do plan to contact him regardless and see what he says. I have to wait, though, for a decision. I haven't gotten denied or accepted... I don't know how long it will take.

As far as this thread getting off track, so many of them do. I rarely see one topic only throughout a post--there are several topics and conversations going on.
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♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥

My name is Sarah and I am 25 years old. I have a lot of chronic health problems. Peripheral neuropathy and POTS (postural orthostatic tachycardia syndrome) keep me bedridden the majority of the time. I also struggle with degenerative disc disease, disc desiccation, spondylolisthesis, arthritis, polycystic ovarian syndrome (PCOS) with insulin resistance, allergies, sound sensitivities, and other health problems.
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Old 08-26-2010, 11:02 PM #36
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Quote:
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Having been through a fair number of doc appointments since this began in January (realize there are those of you who've been doing for a lot longer), and m about ready to jump off this merry-go-round.

Sorry for probably repeating myself, but I was unable to tolerate the usual suspect meds (gabapentin, Lyrica, etc.).

So - does anybody here honestly know whether or not there is anything other than those meds that will take the edge off small fiber sensory neuropathy?

If there isn't, then I'm done paying co-pays if neuros/rheumys can't do anything else for the SFSN and things stay stable. About mid-way through this search, I had a pain management neuro tell me, quite honestly, that he couldn't help me. He didn't keep taking my money, and I appreciated that.

Thanks,

Sheltiemom




I have suffered with a pure-sensory small-fiber neuropathy on and off over the last five years.

That said, I have found both Cymbalta 60 mg per day and Lyrica 100 - 150 mg day to be quite effective (each taken separately in my case).

I got total relief of my tingling and burning within 24 hours on the Lyrica (but with some drowsiness to go with it), and also about 75% overall relief on the Cymbalta.

Cymbalta, however, does take roughly two - three weeks to reach maximum effectiveness.

You must first take Cymbalta at a dose of 30 mg per day for the first seven days to titrate-up, at which point you go to the full strength of 60 mg per day on the 8th day.

You might consider taking the Cymbalta at 60 mg per day, and then taking 50 mg of Lyrica at night in combination to supplement.

Each has a different mode of action (Cymbalta = Antidepressent and Lyrica is an Anticonvulsent), and together they have a syngestic effect at a lower dose then each would achieve separately

Best of luck!.
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Old 08-27-2010, 04:56 AM #37
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I can only make a couple of suggestions, but they might just do it. Although not everything works the same for everyone, I found at least some relief with lidoderm patches. Not complete relief, but I don't think anything has been inveted yet for that. You might also try icing the area. Very simplistic, but very effective. The only problem with icing is the fact you should only use the ice pact for 20minutes an hour. As soon as the area warms up, your kind of back where you started. I hope you find something that helps (at least until they come up with the "miracle" drug I keep hoping for). Best of luck to you and all of us cause we're all dealing with the same thing.


Quote:
Originally Posted by Sheltiemom View Post
Having been through a fair number of doc appointments since this began in January (realize there are those of you who've been doing for a lot longer), and m about ready to jump off this merry-go-round.

Sorry for probably repeating myself, but I was unable to tolerate the usual suspect meds (gabapentin, Lyrica, etc.).

So - does anybody here honestly know whether or not there is anything other than those meds that will take the edge off small fiber sensory neuropathy?

If there isn't, then I'm done paying co-pays if neuros/rheumys can't do anything else for the SFSN and things stay stable. About mid-way through this search, I had a pain management neuro tell me, quite honestly, that he couldn't help me. He didn't keep taking my money, and I appreciated that.

Thanks,

Sheltiemom
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