[zygopetalum]

I would really like to hear what you guys have to say about this.

I've never been to a neurologist or had any blood work related to neuropathy. I've had 2 nerve conduction tests at a local rehab clinic (3 years apart) and was sent on my way with a prescription for Neurontin. Nerve conduction was normal and report stated symptoms consistent with SFN.

I don't know if I'm "different" or not, but I think what may be happening is a possible underlying neuropathy coupled with a raft of significant side effects from my COPD meds. NOBODY wants to address that, most of the time I've been told that what I was describing was attributable to neuropathy or COPD. At one point I was told it didn't matter, that I should just treat the symptoms but I have not been comfortable doing that when no one will even acknowledge there may be some issues with the meds. I recently had physical therapy, PT said in her opinion they all know exactly what is going on, they just don't want to get into it because they want me to stay on the meds.

I'm not an idiot (except with respect to computers lol), I'm a college graduate with enough of a science background to have been very aware of the human tendency to assign meaning to random symptoms and have tried not to do that. I think anyone with common sense would have come to the same conclusions I have.

My PCP told me that seeing a neurologist was a waste of time and $ because there was no cure for neuropathy anyway. I'd like to know what others think of that and if anyone has had experience with meds for other conditions exacerbating pain, etc. Also both meds in question have low incidence association with parathesias, any comments on that appreciated even if you think its something I don't want to hear. I'm going to see Pulmo on Monday and trying to find as much information as I can.

Thanks,
Zygo...in case anyone is wondering a Zygopetalum is an orchid, had just gotten one when I registered and that was all I could think of for a user name....ha

[aussiemom]

As far as I know there isn't a cure for neuropathy. Just treat the symptoms. If you really want to see a neuro pester your PCP till you do, or fire that one and start fresh.

[hoibie@comcast.net]

I agree that visiting a Neuro is a waste of time, at least in my experience. On my virst visit I had some electrical test that confirmed I had neuropathy. He offered me a prescription for a pain killer. I declined. I also had a blood test which did not tell anything. .

I have never been interested in finding the type of neuropathy since there is no cure. When a cure becomes available, I may want to investigate the type.

[malawigirl08]

My doc says the same but I need to differ from this opinion. Mentally I cannot accept that my condition is ideopathic, what if it is being caused by something treatable and I am doing nothing about this.
I too would sack the neurologist and keep searching for answers. Good luck.

[daniella]

I think you need to see a neurologist. I have seen 2 and though they did not do much for me they did rule out a lot of conditions. I think that it is important to make sure there is not another condition that could be causing this. I will say though my 1st emg was done by a physciatrist and I was not dx with PN. Then I went to a neurologist and had more extensive testing NC again,mri,etc and I was dx with PN. I don't know the reason behind why I have PN even through all my extensive testing. So for me now it is about pain control and why I have seen pain doctor/anestesolgist who I feel work more with meds and treatment then a neuro or gp.
In the mean time can you have blood work done? That is a simple test that could possibly show something such as low b12 or diabetic etc.
Hang in there

[glenntaj]

--on the type of neurologist.

Most classically trained neurologists are not specialists in neuromuscular disorders or neuropathy; they tend to be more focused on stroke or epiilepsy of other central nervous system disorders.

It might make a difference to see a neurologist at a major research hospital or tertiary center who specializes in these areas--such people are also often researchers and are much more familiar with types of conditions and testing for them. They are found more often at major med centers--Cornell Weill/Columbia Presbyterian in NYC, Massachusetts General in Boston, Johns Hopkins in Baltimore, The Jack Miller Center in Chicago, etc.

[zygopetalum]

Thank you everyone for the comments, I don't know anything about neurologists and they were helpful.

I'm not looking for a reason for the neuropathy in its self, I know that probably won't happen, I'm just trying to make sure its treated in the best way. Its too complicated to explain the details but I lowered the dose of both meds by about 50% (still breathing ok) a few weeks ago and got around a 50% reduction in pain and some other symptoms as well. I don't think there are too many alternative drugs I could take but I think there may be a few. What makes me mad is that no one has made any effort to figure it out.

The only solution I've been offered is Neurontin and I've learned from my reading here that it really does help some people. A reason I've been reluctant to take it is because one of my meds also inhibits the action of a neurotransmitter and they have some of the same side effects, fatigue, etc. The pain was so bad last spring I was going to go ahead and start it anyway but before I could do it I came up with a COPD med side effect listed as severe and was desperate enough to just mess with the doses. I think Neurontin can do something similar and I don't know what would happened if I'd been on both.

Thanks again, I appreciate comments from everyone, you never know when some little detail is going to help, I've learned a lot by reading here that has been useful in many ways.
Zygo

[Silverlady]

`I agree completely with Glenntaj. It took a neurologist at Mayo clinic to define what is causing my neuropathy. I have Small Fiber Neuropathy caused by Sjogren's Syndrome (autoimmune disease). While they haven't been able to cure my neuropathy because there is no cure for the underlying disease, they have been able to slow it down by treating the inflammation caused by the Sjogren's. And they also have been able to treat most of the pain with medication. I do know for a fact that medications can cause neuropathy. There is an antibiotic that makes my neuropathy go CRAZY !!

I'd follow Glenntaj's (and Daniella's) advice. It might help save you a lot of misery.

Billye

[jurgen975]

Originally Posted by Silverlady

`I agree completely with Glenntaj. It took a now for a fact that medications can cause neuropathy. There is an antibiotic that makes my neuropathy go CRAZY !!

I'd follow Glenntaj's (and Daniella's) advice. It might help save you a lot of misery.

Billye

I agree with this advice it helps rule out the possibility of a underlying illness.
But dont expect to much.
I have SFN caused by i med that is called Dapsone,the crazy thing is there is nothing to find on the internet that you can get SFN because dapsone you can get motorNP or sensoryNP

[zygopetalum]

Well I went to see my lung guy yesterday and got 'flamed' a little. I recently finished PT and her report probably stated I'd gotten some relief from neuropathy (and neck pain) from lowering anticholinergic dose. He made a few statements indicating he was insulted I had not discussed the matter with him, etc. I've been TRYING to do that with him and PCP for the past 3 years and no one would listen. Last year when I told him the pain varied with dose and asked him about parestheis listed as a side effect of med he stated it was coincidence. I took a couple of statistics courses, you can't prove it if it doesn't reach significance but you can't disprove it either, and I know from my experience the drug has an effect.

My referral for PT came from the local pain clinic, the PA there initially stated med could exacerbate PN, later denied he'd said it and refused to discuss anything further until I'd consulted Pulmo. I was planning to do that when I developed gastroparesis (which I was able to identify from reading this forum), I knew it would improve if I lowered med dose so I just did it myself because I was so tired of being dismissed. BAD PATIENT!! Yesterday Dr. agreed I had gastro, med lists ileus paralytic as a rarely occurring event and he agreed my lowered dose was ok. I guess if you develop a potentially fatal condition its significant but if your quality of life is destroyed it isn't.

I know they all feel my COPD is a life threatening condition and that treatment of that is first priority. I understand that but quality of life is an issue as well, and I just don't understand why no one has been willing to discuss a conservative compromise in treatment. I don't have a car anymore, took my pedometer yesterday and I ended up walking a total of 2 1/2 miles in 90 degree heat (missed the dumb bus). My PN hurt a little last night but last year I would have been in a LOT of pain. I know many of you would be thrilled to have that much improvement and I sincerely wish you could. There are a lot of COPD patients who would be happy to be able to walk that far as well.

I know my situation may not be typical but this forum has really helped and I appreciate it. Right now I'm going to get busy and go shopping for some easily digested food because I'm beginning to feel a little like I swallowed a rock again, learned that here too.

Sorry for the rant and thanks, have also learned here its not unusual for people in general with PN to have problems finding help.
Zygo