I’ve seen quite a few posters mention appointments with rheumatologists and would like to open this up for a better understanding for those of us in Limbo Land. Have you been referred to a rheumatologist?
If so, I have a gazillion (just a tad bit exaggerated) questions.
Did your neuro explain in detail the thought process behind the recommendation and possible diagnoses?
What tests did your neuro do to rule out other autoimmune diseases before making the recommendation?
Did your neuro recommend any particular specialty within rheumatology?
Have you seen a rheumatologist yet? If so, where are you in the process?
My neuro has recommended that I see a rheumie. My understanding of this decision is that first, she does not believe that my brain lesions are consistent with MS and secondly, she says that joint pain has been one of my complaints and perhaps the rheumy can come up with an explanation for this pain (which I believe is due to muscle spasms) and give me injections to relieve the pain.
There have been multiple panels of tests done to date which appear to rule out Lupus, Lyme Disease and other tick borne diseases, Sjogrens and tests for rheumatoid factor have all come back negative. The last round of tests included several for vasculitis, which also came back negative.
My neuro did not recommend any particular specialty, just Yale New Haven. I selected a rheumy who listed joint disease and autoimmune disease as areas of interest. After two weeks, I received a letter informing me my appointment is scheduled for 5 months away.
Most rheumie’s within easy commuting distance specialize in arthritis and Lyme Disease.
I am dx with CIS - going through second round of opinions.
First neuros office recommended a rheumy becuase I had a high level of ANA on my initial blood work that they did. This may mean lupus. The rheumy did more specific testing on my blood to look for lupus, and did over all exam looking for any kind of vasculitis, arthritis etc. I looked good and all his bloodwork came back negative. I only saw this doc once, and got the results pretty quickly.
MS is hard to dx, so it's very common to see other specialists along the way to rule out mimics.
I was actually referred FROM the rheumatologist to the neurologist. Because I have a history of recurrent pregnancy loss, hives from the sun, livedo, and a few other things, initially my symptoms were thought to be caused by lupus.
However the rheumatologist is adamant that what's going on now is not due to the traditional auto-immune culprits manifesting in the CNS(obviously, MS is believed to be an auto-immue disease but it's treated/tested for neurologically). At this point the only thing showing up positive is a borderline ANA test.
Did you get the antibody testing for anti phos syndrome? Just wandering. There are other blood tests for autoimune other the ANA. I have some issues with Livedo rash, raynauds etc but mine is related to something rare callled hyperviscosity syndrome which is not related to MS.
I have a low titer ANA of 1:160. My primary doctor was sure that I had lupus and referred me to a rheumatologist. I went for years going from rheumatologist to rheumatologist and have had several different opinions and diagnosis. My sister talked me into seeing a neurologist because she was diagnosed a year or so before I saw a neurologist and I shared many of her symptoms. I really doubted this was my problem, and I thought that it would be an incredible waste of time and money (and money doesn't grow on trees in our household). I went anyway, and was extremely shocked when the neurologist pointed out the brain lesions on my MRI and diagnosed me with a demyelinating disease (six months later MS).
Other autoimmune disease symptoms overlap with MS. Plus, having one autoimmune disease may mean you are more likely to have another one. You never know--maybe your rheumatologist will uncover something that you never would have expected.
In March of 2010 I was first referred to rheumatologist #1 when my old PCP suspected Psoriatic Arthritis.
After my first visit and a slew of blood tests, he said I didn't have Psoriatic Arthritis. He gave me a diagnosis of Polyarticular Fibromyalgia. I have pitted nails, fragile skin(sloughing when touched) and a spreaded rash; these things are the rare symptoms of Rheumatoid Arthrits. So, he said the polyarticular. He gave me the Fibro dx. so he could rationalize giving me pain medicine until a neurologist picked up my case.
The blood tests that have remained positive are:
Doctors say that these aren't "positive enough", whatever that means.
So now November, my PCP just referred me to another Rheumatologist when I saw her on Wednesday. She wants them to check me for Sjogrens. I have many of the symptoms, unquenchable thirst, dry eyes, neuropathy, loss of taste, mouth sores, Parotid gland dysfunction etc.
I haven't had time to worrow about the symptoms above because I have other symptoms that are more debilitating.
So, I don't know what to think.
Like other inflammatory/autoimmune disorders, they sort of interlap. I could have Sjogrens that is secondary to MS, or I could have primary Sjogrens and have something else........
All I can say is that I am glad to have all of you. It is wasn't for you guys, I don't know where I would be.
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