Well saw neuro today who stated I definately have small fibre neuropathy, but there are no more investigations he will do so there is nothing more he can do I just have to try the pregabalin and hope it helps.
I told him about my concerns re joint pain swelling, dry eyes etc but he wasn't interested he said he didn't know more than the rheumatologist so if they say I don't have sjogrens then I don't.
So it's a cause of tough luck get on with it

I feel so alone, no one seems to be hearing me.
I have had to cut my hours at work
Change my car for an auto
I can't do lots of everyday things without difficulty/pain
I have 1 pair of shoes that don't cause me agony to walk
Yet I just get told sorry can't help you arghhhhhh I am soooo frustrated it's untrue.

This is the same for me. Even with the diagnoses of small fiber neuropathy and borderline sjogrens, they are of no help and just want to see me for follow ups. Its very disappointing. I'm sorry with ya

I feel for you. It seems crazy, that theres nothing they can do for us. I'm really new to this and haven't been able to come to terms with this yet ( especially ibly being 31) and knowing that I did this to myself by having acupuncture) . I don't know how to help u cope or manage and I can't tell U what the future brings cus I don't how this progresses. But I have asked around a lot and it seems people don't get better ( just being realistic) but it seems like they learn to cope and deal eith it enough to live life. Look for the positives ( ex. can u sleep ? If you do that's amazing and be gratefull, is it localized to a few areas etc). Try the med and see if it helps u. If u have been able to go this far without meds then hopefully the pain is at a level where med can knock it out. I don't know how much my post will help... Just trying to share a little lol but my post us definately not as useful as the ones from the veterans. I'm sure one will be along soon

I am so sorry to hear this. If it helps at all this has happened to a lot of us. Mine sent me to Johns Hopkins to make sure there was nothing she could do and when the doctor there confirmed her findings, severe small and large fiber neuropathy, hereditary axonal, and progressive, they both discharged me. The doctor at Hopkins offered further tests but said they would be of no real use since there is no treatment except pain management. "Good-bye and good luck" was the last thing he said.

I loved my local neurologist, she is a neuromuscular specialist, and I figured I would just go on seeing her once a year or so forever. Nope. "There is no treatment and I don't do pain management." Okay, so I asked about testing every few years to see how it is progressing. "That would be a waste of time and money because we know it it going to progress." I begged her to at least let me come in once in a while and she said it would be taking money under false pretenses. Oh, and I should be glad it isn't ALS.

I was so upset I cried all the way home. My youngest sons, then 11 and 15, were with me thankfully or I might have driven into a tree. I cried for days afterwards and I never, ever cry. I felt so alone. I am still upset about it, five years later. Thank God my PCP agreed to handle pain management, and he has done a great job, but I still feel abandoned. I would like to discuss this with someone who knows more about it than what he looked up on the Internet.

Since then other doctors have told me that she was right and I should be glad that she was honest with me. Also once you have a diagnosis for insurance purposes they really limit additional testing. I would love to know how the arthritis in my spine has progressed but I may never qualify for another MRI.

I have a podiatrist and an physical therapist who are at least familiar with CMT, so tht helps. I can really empathize with what you are going through, but doctors want to "do" something and we make them uncomfortable. They can't cure us and they know we are suffering, but it reminds them that they aren't infallible.

http://more-distractible.org/musings...20to%20chronic

This gives a little perspective on the other side of this painful issue.

Thank you for your understanding

I need to go back to my GP now and plan what next as I am getting no meds for my joint pain at all and it's really debilitating second opinion from a Rheumy next step I think.
Life shouldn't be this difficult should it ?

I have have tried other meds but they effected my liver so fingers crossed the pregabalin works ok

Really good read IMO - thank you - dealing with nueropathy and pain has to be one frustating things

http://more-distractible.org/musings...20to%20chronic

This gives a little perspective on the other side of this painful issue.

and the first response below it really hits home for me - I guess sometimes the cure comes with a large cost

How about figuring out that if Rx drugs are the number 4 cause of death in the US that maybe they aren't as safe as pharma reps and you like to say they are and the sudden onset of crippling issues from a fluoroquinolone antibiotic might really be from an adverse reaction to the antibiotic and not some weird coincidence. How about not being so pig headed to not believe that a drug that has black box warnings for tendon damage and for neuromuscular weakness actually DOES cause systemic tendon damage and neuromuscular weakness - is that too hard a leap for you to make?

I did think that the comments on that article were very interesting. There is no where to go with the bitterness, though. Like trying to prove that my infant's febrile seizures were caused by immunizations, never mind that he never ran a fever except when he had the shots. He has severe expressive and receptive speech disorder, a known complication of infantile febrile seizures, but it is impossible to get a pediatrician to admit it.
I understand that there are costs associated with everything, and I am not an anti-vaccine person but it would be nice if the collateral damage were acknowledged by doctors.

That article is one of the Top 5 things I've ever read on the Internet. Thank you for posting and its full of valid points.

Billylyne5
Your day yesterday sounds exactly like mine - specialist visit - concerns dismissed - back to zero. Don't know where to go from here. Feeling same as you.

Hi there,

I am surprised they are discharging you. I am still under investigations but my neuro told me they don't discharge you. They have to see you on a regular basis for follow up to check if things are getting worse i.e. looking for large fiber involvement. They also need to keep running the same blood tests ie.ANA, HBA1C to make sure that things haven't changed or you haven't developed anything that could make the neuropathy worse.

I am in Uk not sure where you are?

Loulou