Discharged by my neuro
 

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:hug:

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

theres nothing they can do, because there hasnt been enough research on sfn, treatment wise, sfn associated with other conditions like autoimmune.have you been checked for other autoimmune, and diabetes.

Great article thank you for posting


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I am in Lincolnshire, he said he has done all the tests and is satisfied I have SFN
The rheumatologist is convinced I don't have any condition as her one set of bloods were negative. Both have discharged me with no plan to repeat any bloods at all. I even said what about blood tests changing in the future and the Rheumy agreed they could but still no plan to re test.
I am back to my GP to just try and manage symptoms, I also see a pain consultant who just books me in for a lignocaine infusion every three months.
It's really crap care 😏

It's too bad that you could not go on seeing that neurologist. However, as far as EMG/NCV testing for a person with CMT there is no reason for it after once being diagnosed. My support group was told this by an expert neurologist who knows CMT. You know, at least us CMTers know, that we are progressing. The test would only confirm that with the neurologist. So in that respect there was no need to keep on with the testing.

However, as I said, it is too bad that you could not still be seeing her. At least you have a podiatrist and a physical therapist who are at least familiar with CMT.

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 😑

I have low white count all the time and low platelets. This started about the time of my symptoms. I thought it was the surgery, but has consistently been this. Blood counts were excellent prior.

Hi Billylyne, sorry you are dealing with the *** healthcare system. I have confirmed Ankylosing Spondylitis (AS) which is autoimmune and SFN confirmed. My bloods just came back clear clear clear yet I am in the worst AS pain at the moment. It just doesn't tell the whole story. I am only diagnosed with AS due to specific MRI tests of certain areas implicated in AS and the fact I have a particular HLA gene and sometimes get eye problems linked to AS. My bloods therefore tell nothing at all of my current autoimmune status. We are still so behind on understanding and measuring autoimmunity. My neurologist is also trying to wash his hands it seems and defer to the rheumatologist. The rheumatologist is trying to offer something by way of treatment for AS and some hope it may help SFN. But the treatment he offers can itself cause neuropathy. Argh. At least he is trying though. Did anyone you have seen suggest trialling Plaquenil for Sjorgens? Or did they want more definitive evidence? I don't know if Plaquenil can help with SFN from Sjorgens or stop the attack and therefore progression. Others may chime in with better knowledge of Plaquenil than I.
Ref the shoes, I understand that. All I ever wear, ever, are one pair of trainers and a selection of 2 pairs of tracksuit bottoms. I am 35 and don't see that ever changing until the day there is a neuropathy cure. I'm off sick and have been for two months so have same worries ref work and the future.
I don't know if you could try get second opinion? I'm hopeful its our right to at least access that on NHS??

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.

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.

UTGrad,

I wholeheartedly agree with them. The NHS is one of the best things about our Country. Unfortunately, like all large Institutions, there is bad management, waste and Govt interference.

I will usually hear nothing against the NHS in principle, and the staff as a whole from Nurses through GPs and Doctors in the various Clinics to the Surgeons and Consultants. However, from years of personal experience and hearing from others first hand and here, there seems to be an inbuilt problem with Neuros in the NHS. Perhaps it is due, in part, to their never staying in a Post long enough to build up a rapport with their patients.

Dave.

I challenged the rheumatologist about her attitude of denying I have sjogrens because of negative bloods as even the NHS website says that 40% of people with sjogrens have normal bloods, but she said no she would never say I had it without positive bloods so she won't treat me at all,she offered nothing, even my ophthalmologist said you don't need positive bloods to have sjogrens, but she said she can't diagnose it, but she said the treatment for my eyes
She agreed I have lots of sjogrens symptoms though lol

i think i would get a second opinion from another rheumatologist from what you are saying. As far as being discharged by neuro and rheumatologist, that is pretty cold the way they handled it. There are ways to handle things and that wasnt it. The total lack of any human empathy is astounding in these stories we read about here.

If you dont want to find another rheumatologist right now, make a calender mark for yourself to have the GP repeat the blood tests in 6 months or a year or sooner if you get worse. if the results are positive you can get a rheumatologist then. of course this assumes the GP will do it and also takes care of whatever else you need medication wise resulting from your symptoms.

I have been discharged by three neuros since there are no more tests, my diagnosis is confirmed and there is no cure or treatment. My PCP prescribes meds for the symptoms and well, that's about it. Now I wait and I wait for new treatments to come to market. I sure wish they would hurry. :cool:

I wish they would see you at least once a year to monitor progression etc. or just to talk about possible new treatments/meds etc.

It's so sad that they just don't care. I have been discharged by three neuros b/c there's "nothing wrong" with me. After 4 neuros this last one is doing a skin biopsy. I got to this 4th one after the 3rd one said I have neuropathic pain but since emg and mri is normal I don't have anything wrong. But sent me for another opinion at least. The first two just said "see you later"

It is very discouraging to be dismissed with such severe symptoms. I was first told mine was anxiety related until I insisted that it was not (how I wish it was that simple!)

Much of the testing is to rule everything else out before being given the dreaded "incurable idiopathic peripheral neuropathy" diagnosis and sent on your way with a handful of prescriptions and well wishes.

Below is the final statement from my neurologist after he ran some tests. Although he hasn't dismissed me he didn't really have any answers.


Your cervical spine shows some mild arthritic changes (I consider this essentially normal changes that we see with aging). The brain tissue looks normal on the MRI, but you do have some sinus disease (evidence of chronic sinus issues). No signs of MS however and these things would certainly not explain your symptoms. Your labs showed an elevated B6 (AKA pyridoxine), so again I would stop any supplements or vitamins with this in them unless told to take them specifically by a physician. At this point I would have to say that we do not have a certain cause for your symptoms, but we have eliminated many of the more severe conditions that could have caused them. Your symptoms may be related to the viral illness that you had around the time they started. Virus can cause some very strange symptoms and/or with a component of anxiety. If this is the case the symptoms typically just improve over time

Wow. That is strikingly similar to my experience, including the elevated B6!

How old are you UT?

I'm 34 but in full disclosure I was taking a Centrum "Energy" multi vitamin that has 300% RDA of B6 at the time of the blood test. I immediately discontinued the supplement. I was having symptoms before I started taking the Centrum Energy multi vitamin so I don't think the symptoms are due to the elevated B6.


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Yeah, if excessive B6 was the cause, the PN symptoms would likey gradually improve after supplementing was stopped.

it could be due to your b6, and your overexercising, which can damage your skeleton, people who did "crossfit" were more likely to get injuries, this kinda shows injuries and overexercise can exercerbate each other.
@billy, did you check for endocrine disorders, Endocrine disorders also can cause PN: diabetes,thyroid issues, other autoimmune.

Do you mean discharged as in the neuro doesn't want to see you for followup appointments once a year?

I can't believe it. I have just read 4 books written by rheumatologists and she is so wrong. How can she make that statement? I'm really mad about it. Can you go for a second opinion? :mad:

He doesn't want to see me again at all as he said there is nothing he can do, he has decided I have SFN and that's it.

*admin edit*

II have to say this: Overall one great doctor saved my life, but i have found doctors are incorrect too. we need to try to find a second opinion, or else we are doomed.

The stuff posted at NIH is the result of scientific experiments and evident, so its likely to be address there too...look it up, print it and send it to get a second opinion.
Oh, one more thing: Before you raise a hell storm, ask here help based on your findings. don't blame because you will hurt their ego and they become defensive. Try to ask for help too, i am between that and loosing patience sometimes with the insurance doc, who has a difficult job to do, but I am in the one in pain, not him. Just woke up from a forced nap again, because my eye is constantly sore and my face hurts and sense are messed up. Don't quit on yourself, stay strong. this is an opportunity for you to become even better! :)

It frustrated me a lot, I am going to ask my GP to refer me for a second opinion, but who knows the same could happen again as its pot luck who you get to see 😐

I wouldn't mind so much if they would at least try and treat symptoms without a diagnosis but she won't even do that, she just said I don't have anything she can treat

This is what I was told as well. After about a year of testing, I was referred back to my PCP for symptom management. In my experience, seeing neuros was for testing and diagnosis, nothing further.

Good Morning Billylyne :)