Originally Posted by Billylyne5 (Post 1137038)

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

Originally Posted by Susanne C. (Post 1136977)

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.

Originally Posted by LouLou1978 (Post 1137065)

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

Originally Posted by Susanne C. (Post 1136977)

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.

Originally Posted by Billylyne5 (Post 1137099)

I have had blood tests for pretty much anything they can think of all negative except

Low white count all the time


I do have textbook sjogrens symptoms ��

Originally Posted by Billylyne5 (Post 1137099)

I have had blood tests for pretty much anything they can think of all negative except

Low white count all the time

Equivocal DSDNA but no plan to repeat this.

Neg ANA
Neg CRP
Neg ESR
Neg RA
Neg anti RO and LA
Plus lots of others
No diabetes and low risk of it too
I do have textbook sjogrens symptoms 😑

Originally Posted by EnglishDave (Post 1137136)

Billylyne,

Just thought of a great way to save the NHS millions - get rid of all the arrogant, uncaring or downright bad Neuros.



I feel for you.



Dave.

Originally Posted by UTGrad (Post 1137144)

Just a FYI English Dave there are many in the U.S. that point to the NHS as an exemplary health care system vs the largely private system here. I guess both have their benefits.