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.