Nothing!!!!!
 

I went back to the neuroligist on Monday for the results of my blood tests, well all I got was that my ANA was positive and everything else was normal and sorry he could not do any thing for me and good bye, no come back and see me in a few months, just NOTHING,:Speechless: even on my first visit all he said to me that PN was quite common, well I knew that from the many people on Neuro Talk. Oh and that drugs like Neurontin help and that is it. My Doctor sent me to him to help manage this thing and I seem to be the one managing it. I am still left with a dx of possible Small Fibre Peripheral Neuropathy. I now do not know what to do, other than go back to my doctor and see what he makes of this. I was so upset when I left the neuroligist that I did not know what to do or say to him. I did ring up when I got home and asked if my blood test results could be sent to me, they said they would send them to my doctor, so I will get them off him when I see him next. It is so scary that in the past two years that this thing has gone from tingling in a few toes and now pain and pins and needles right up both legs as well as my hands and arms and head and other places, yet he could give me not comfort on what is next and what I could expect.
Thanks for letting me vent and any ideas on what I can do next would help, but here in Brisbane, Australia I am very limited.:frown:

Sounds as if--
 

--the next step would be a rheumatology consult, if that is possible; those are the specialists who deal with anti-nuclear antibody related autoimmune conditons, many of which can certainly have neuropathy as a presenting symptom.

It would be helpful if they gave you and ENA--extratable nuclear antigen--test to see what pattern came up; different patterns correlate (though not always completely) to various autoimmune/vascular/collagen conditions.


See:


http://neuromuscular.wustl.edu/antib...html#vascassoc

I'm sorry I have no advice as to what you should do next.I'm a few days away from being diagnosed,I believe anyways.But I do understand your frustration with the neurologist.Trust me when I say most neurologist are over rated and give neurology a bad name all together.I've been through 4!!!Well I'm on my 4th one now and the sad thing is she's the NP of the neurology department I go to,and so far she's the best.I even traveled 3 hours away to the reputable Cleveland Clinic in Ohio,only for the neuro to give me a routine exam and send me on my way.All I can say is hang in there and hopefully the right doctor comes along sooner than later.Best wishes to you.:hug:

why am I not suprosed,, spent two weeks at mayo in May with no answers,, thanks Mayo for having me drive 1800 miles to find ut nothing,,

Oh Lesley
I am soo sorry, I was thinking of you the other day. Please try to get a referral to a Pain Management Centre, that is where I have had the most success.
Take care:)

So many in the "same boat"..
 

Sorry you have had such similar results from 'neurologists'. It seems that since it is so "common" it would benefit them to find a CURE--or at least a way to help us live a decently, pain-free life. Perhaps the only way we might get real help is if a bunch of neurologists start suffering the same awful "burn-pain-misery". Then perhaps they would get busy and find out how to get relief for all of us.

Gabapentin (Neurotonin) is the only thing I have been recommended to take, and now, after a year of torment, increasing the dosage is all there is to do.

Best wishes for relief SOON!

If Neurontin seems to work but you are constantly having to readjust dosage upward, Lyrica is another option.
After 7 years and being upped to 4200mgs/day of Neurontin/Gabapentin,
I switched to Lyrica 3 yrs ago, and now take 600mgs/day

I am a +ANA and have neuropathy......I get IVIG. See a rheumatologist and if you don't get any satisfaction there, perhaps a different neurologist with an interest in inflammatory conditions.

Change of Heart
 

Seems my Neurologist had a change of heart, he has now told in reply to my Doctor - possible Sjogren's after telling me nothing and sorry he could not help he then seems to have changed his mind. I had asked about Sjogren's on both occasions and the first time he said that is what the blood tests where for and the second time I asked if it was a possibility and he said no. I have now had more blood tests - anti- ENA and dsDNA plus some others but not sure what they are. I do have a lot of sjogren's symptoms. I should have the results at the end of the week so will keep you all up to date. Thank you everyone for your replies I will know which way to go after my results have come back.
:circlelove::circlelove::circlelove:

The same thing happened to me. Only it was a rheumatologist, not a neurologist. I'm due to see a neurologist next.

Lesley- Good thing you didn't just give up!
 

Now go do a search here first using the 'search feature' in the top blue bar and then go from there and search the dickens outta Sjorgens'!
You've asked just the key ONE more question that got that neuro into GEAR!
Learn more? Ask HARDER [more complicated] questions! Let the doc know you aren't stupid or a chump! [http://dictionary.reference.com/browse/chump ] Docs often take us for this? Sad but true. Let the docs know you are smart, self-interested, curious, and want to get to the ROOT of this all! Once a doc knows you aren't a doormat or stupid? They'll respect you for your questions...only don't ask too many at once? Just 1-3 biggies, and work your way down the list/lists as visits go on. Don't forget? Docs have MANY patients and short attention spans. Sigh.
IF IVIG should come up as a possible treatment? Do know that it 'works' for from 40-60% of those who try it. So it's a flip-a-coin as to yes or no if it works. But? When it works? IT WORKS! Keep at it and keep faith in yourself that something's NOT right and that maybe it CAN be helped! :hug:'s a'plenty! - j

Negatives are a good thing
 

And my physical therapist told me to just think about the negative results as good things! At least I didn't have that thing wrong....but I was so wanting to find something wrong!!! I had not found anything out yet, like you.....but eventually I did....

Even Sjogren's is a mess for diagnosis....it can be anything from seroneg. sicca to full blown one tick short of scleroderma. Rheumatology needs to fix this mess. They likely go with Sjogren's whenever there is PN, but PN can occur in ALL immune diseases.....There is also UCTD, and if the ENA is negative, UCTD is a possibility, and UCTD will likely be diagnosed even more in the future.

For some reason when there is PN, they jump to Sjogren's, even if it is seroneg.

I dunno....well, at least you know something autoimmune is going on....same for me.

Cy? Well, wouldn't up-to-date training of these trodolytes help?
 

http://www.urbandictionary.com/defin...erm=Trogdolyte
Pick your definition?
This is what second and third opinions are for..... The one that gets you where you THINK you need to go? Is the one to go with.
I've been there? I do appreciate all that you are going thru! Sometimes It can be a road where you end up far from where you expected tho...so go with all the flow of the diagnostics and tests? But don't give up! :hug::hug::hug:'s - j

Idiopathic
 

Back from my doctor and my blood test results and he said my tests for Sjogren's are negative. I guess I now have to accept Idiopathic as my diagnosis. I don't know what else to do we don't have the Medical Centre's like you do in the States so I am at a lose at what to do now.:grouphug: