On my own I guess......
 

Just had a follow up appointment with my general neuro. He said he still finds nothing to support a specific diagnosis other than the generic "disturbance of skin sensation".

The notes from the neuromuscular specialist I saw in April said he did not recommend any additional evaluation or testing. And specifically said he found nothing to support the need for a skin biopsy.

My general neuro is pretty much following the specialists lead. He said I've reached the "point of diminishing returns" with regard to testing. And he won't refer me back to a specialist unless there is some significant change in my condition to warrant it. Of course, he will give me more Gabapentin if I want it, or cymbalta, etc.

So, basically I can have all the drugs I want - but no more testing and no more specialists to actually find out what the problem is. What a pantload that is :eek:

I'm so sorry to hear that. Maybe you can go forward with a skin biopsy on your own? If it comes back positive, would that change their attitude and help you get more testing? It seems you must find the cause in order to eliminate or correct and hope for healing or stop progression.

yes, I do need to find the cause - but I don't even have a diagnosis yet. I think that's really my first step. I have an appointment with my primary Doc in a few weeks for my annual physical. He's usually pretty good about pointing me in the right direction when it comes to dealing with the specialists and sub specialists. I'll see if he can offer any advice.

I don't know of any places around here that will do testing without a doctor's referral - even if your paying out of pocket. I'll do some digging though...

Sorry you've joined some of us at this juncture.

If it makes you feel any better, I never got a skin biopsy either. After having numerous tests including four MRIs, a spinal tap, and four rounds of bloodwork, my neuro diagnosed me with idiopathic SFN. He said a skin biopsy would confirm the diagnosis, but it wouldn't give any clue as to the cause. He also offered me gabapentin.

I went on to go to an integrative medicine doctor who did a hormone test, a NutrEval test, a food sensitivity test and an Oral Glucose Tolerance Test at my request. I learned of issues, but none that would outwardly explain my neuropathy. The NutrEval test did show, however, that I was low normal on alpha lipoic acid, and she recommended that supplement. I do think it dialed back my symptoms a notch, but by no means cured me.

I haven't given up on finding the cause, but I know that it's going to be up to me. In my 6 month follow up, my GP asked if I wanted any more tests run. She seem amenable to helping me if I come up with something, but is out of ideas herself.

Yes, as you put it, it's a pantload, and we're on our own to figure this out.

My engineering degree didn't prepare me for this. :rolleyes:

Yes, the skin disturbance really gets me, because neuropathy is nerve damage. And if you don't have damage, who does?

Looks like you might try this link, if anyone will listen:

http://www.hopkinsmedicine.org/neuro...europathy.html

Good luck with the neurologists. I have only met one kind one yet, and have been to half a dozen (some famous, some not).

Thinking of you...

That is just how they medically code your issue when either you haven't had biopsy or have a normal biopsy. Either way it sounds like this doctor probably wouldn't do much for your even with a positive biopsy.

Don't let this get you down. :)

Yeah, I also have an engineering degree - and no, it didn't prepare me for this.

But, at least it prepared me to be able to do the research, understand the reports, ask the critical questions, etc. I feel for those who face this without having those skills.....

I was also thinking about going to an integrative medicine doctor, that might be one of the next steps I take.

Being an Engineer, your job is to always have the solution to a problem. That's what makes this so frustrating to me on a personal level. The solution to this problem is very elusive - if there even is a solution.

Not being able to "debug" this problem is absolutely maddening to me. Being aware that I'm fully delusional to think this, I feel I should be able to figure this out.

Let me give you just a little insight into my experience with the integrative medicine doc I went to...

She spent a LOT of time with me (as did my neuro), so as far as gathering information and listening, she was great. I was also generally pleased with the tests she recommended as she was thinking outside the box. Now that I've learned more, however, if a "food sensitivity" test is recommended, look into the science behind it before spending the money. It's questionable.

I tried both acupuncture and manual therapies with her, but got no relief. The only other recommendation she had was for a two-on-one consultation with another woman and herself. I can't remember the term she used for this other woman's specialty, but it was rather "out there" getting more into the Eastern medicine/spiritual realm of things. I opted out of that. I do have an open mind, but so far, none of the Eastern medicine things I've tried have helped me one iota.

Based on her profile, she looked like the perfect choice to help with this, and it was beyond her.

http://www.mjfishburnmd.com/


Oh, I should also mention there's the ever-present offering of supplements...expensive ones. They weren't over-priced based on prices I see on the net for the same product, but they were ridiculously expensive. She had recommended one for my liver since one of my liver enzymes was low, and I think a bottle of that was $80! I didn't ask the price before agreeing to it. I nearly died when I saw the credit card slip.

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Hi Ragtop, I happened to see this thread as I was reading through some of the recent new posts.

If my neurologist told me that I was at the point of diminishing returns regarding further testing, I would want a second opinion. Perhaps when you go in for your annual physical your PCP can order a skin biopsy for you. My PCP ordered an MRI and a doppler test for me when my neurologist didn’t think it was necessary.

Your PCP should also be able to give you a referral to another specialist. By the way, are you sure that your health insurance requires a referral? That used to be the case with my insurance, but this year my coverage changed and now I’m able to see any specialist in my geographic area without a referral, assuming the specialist herself would be willing to see me without one.

I wanted to chime in with support, but also the unsettling news that having positive tests don't always get you much with neuropathy. I have documented length-dependent neuropathy, SFN neuropathy, sensory & motor nerve damage, and some autonomic nerve symptoms. All lab tests, MRI`s, spinal tap are inconclusive. I have strong autoimmune family history but nothing concrete is showing up in bloodwork. I have yet to do a muscle or nerve biopsy, that may be next. I have spent a fortune in time, money and emotional stress and still have no cause to treat. I've had to take time-outs from what feels like a wild goosechase to save my sanity.

I am offered gabapentin or lyrica for nerve pain. Like many, I am addressing diet & supplements. I know how important it is to find the cause and hopefully find a treatment to fix it. Over 50% of us don't.