Now My Turn.....
 

To be discouraged, went to neuro yesterday, my skin biopsy was perfect (his words!).......I asked him, "If I am so darn perfect, then why do I feel like I am plugged into a light socket??!!" He said he sees about one person a year with these symptoms with no found dx. I did insist on the whole parneoplastic panel and some tests for blood cancers. He agreed, but said "highly unlikely." I pressed him about late onset MS, I have heard of spinal tap being neg. and still having MS, he said "Yes, this is possible, but I do not have MS." I guess he can see it in his crystal ball!

No, I did not get the "numbers" or report of skin biopsy, I was in such a daze, I forgot. I will call for them.

I asked him to give me a dx. of some kind, even one word....he said "parathesia", I said "That's a symptom, not a dx!".....He smiled.......

It is funny when I think about it, to get all these "negative" results and not be happy about it, but it is hard to be happy when the symptoms are present with no reason found, can't help but feel he is missing something.

He encouraged me to get a second opinion, which I just may do, but have to muster up the energy to start from square one again.........

Well mine was normal too but my Neuro says he still says sfn as my pin prick test is abnormal plus since I am glucose intolerance he now says something is up!

Was your test sent to therpath labs. I emailed them with questions and got nice detaed reply back within an hour. So if u have question do it.

They said they even looked for amyloiddosis, and sweat fiber density.

So did you get the blood test for Paraneoplastic.
Have they done monoclonal protien panel?

I do think, from what I have read that glucose intolerance can cause a lot of symptoms, I am also having that retested (got script from regular Doc)

I don't know what lab my skin biopsy was sent to. I didn't have a sweat test done. I haven't noticed any problem with that though.

I will be going for paraneoplastic test soon, have to make a lab appointment.

Yes, I had test for M proteins in serum and urine - negative.

How exhausting this is...........

I know it's exhausting but if it wasn't for these sites and people I would be lost.

I think the sweat test was fir autonomic neuropathy.

So let's see we have gone thru a lot of test ... What's left!!

I know how you feel. I should be in perfect health according to the tests. I think I've had every blood test known to man (ok I'm exaggerating) 4 MRIs 2 EMGs and a skin biopsy...all normal. So the cause of the pain is unknown. Johns Hopkins did give me a DX - Idopathic Polyneuropathy. I've been referred to the peripheral nerve center up there by a pain treatment doc who is concerned that my condition is "complex."

A stupid Question......
 

How can you have a dx of neuropathy if skin biopsy and EMG are ok?

One can till get a diagnosis of neuropathy--
 

--if responses to manual nerve testing (which includes pin prick, reflex, and in some cases, monofilament testing), or results on quantitative sensory or autonomic testing (i.e, sudomtor axon reflex test, sweat test, Valsalva maneuver, tilt table) are abnormal. Admittedly, with some of this, one relies on the patient's reports in the absence of "harder, more objective" results.

Then, too, some docs won't give the diagnosis without such "harder, more objective" results.

I really know...
 

How you feel. We are in the same boat. I truly know what it feels like! I was just saying to my hubby last night that if I just had a diagnosis, I would be able to accept this illness, take my meds and carry on with life. Its the living in limbo that makes it so difficult for me. I don't like the unknown. But I do think that at some point I'm going to have to accept that there are alot of illness that Dr.'s just can't figure out.

I think that there is a grief process we go through when one gets an illness that so heavily effects our life. I certainly have been going through that these past 3 months. I believe that its possible to come to a place of acceptance and peace, even without a diagnosis. But it is a process that takes time. And everyone is different in that timing. But having good pain management is crutial for that too. When we have our pain under control it makes it eaiser to forget that we have this. I've been working with a therapist and also reading alot and trying to change my mind on the way I view this situation. Try to stay more focused on the positive. It helps. But some days I feel so hopeless too. Lately, the negative days are less than the positive ones, so I hope that continues.

Hang in there! Just think if we had this 100 years ago, there would not be any meds to help the pain. We are at least lucky to live in the age we do. Keep your head up! We'll get through this!

IMO,, and the neuro agreed wh me last week, the pin prick test is pretty suggestive,, you think you feel it being dull or sharp, then you begon to second guess yourself,, was it sharp or dull,,
The one and only place I was sure it was dull was in my hands,, I had my eyes closed and I told him that if your using a ball point pen, then its dull,, he was using a pin,, I still have the red dots from the pin on my hands,,
If the EMG;s and the skin biopsys from THREE places show nothing,, then its something else,, BUT its quite possible the biopsys were not read correctly,, it might be prudent to have them read again by a outside source, mine was done by Athena,,

That's what the docs at Johns Hopkins say it is. I guess from pin pricks that revealed numbness and my reported pain, Every test I've had is normal but I still hurt. 4 MRIs. 2 EMGs, a Skin Biopsy, Blood work of all kinds.