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oddity wrote:Another strange issue I am having is skin changes on my lower legs. The skin on my calves has become wrinkled and just odd appearing. Do you have any skin changes? I think this may be from lack of activity and my legs aren’t sweating like they used to. The MS specialist I saw says this is part of SFN.

No skin problems but I am losing hair on my legs.

I got a call from UCI on 8/17 telling me they want me to go to see a physical medicine doctor asap. I went the next day and they basically said that because of my symptoms they believe they it may be a Rheumatic disease not Small Fiber which is what I assumed from the start that it's not small fiber and that's a generic diagnosis. They also kinda of said that. They did a test where they push on several spots on your body and if you feel pain then that's indicator for Rheumatic diseases along with the numbness, hip pain, leg pain and swollen knuckles. They also determined that I have left hip weakness. I still feel like they are not telling me everything they think is going on. For example, the new doctor I saw kept saying if it's not Rheumatic then unfortunately they may not know what it is. I said so what do I do, just deal with it and they said no, you go back to Neurology for another opinion. So maybe they are just eliminating possibilities for a MS diagnosis or they really don't know what's going on. I don't really know at this point and I am tired of thinking about it. I am probably going to get a copy of my medical records to see what is going on, notes and progression reports.

I have the Rheumatologist appointment on 9/6 so we will see what he has to say. I would imagine I am in line for numerous blood and scan tests. That's what the physical medicine doctor said too. It's probably going to be a long time before I know what's going on. I did test negative back in January for numerous autoimmune tests but they told me you can test positive later on as inflammation in your body increases. She also set me up for physical therapy and acupuncture visits which I thought was really odd considering she couldn't give me a diagnosis. She said we have to treat the symptoms now to stay ahead of them. You always think of stuff to say after you leave and I should have asked her, why are you sending to physical therapy if you don't have a diagnosis and what symptoms are related to what illness you think I have? I believe it's for the stiffness and pain but I am going to wait on that as it is $75.00 a visit with my insurance and she wants me to go twice a week for 8 weeks. Do the math on that and you can see that's a good amount of money with no real indication that it may or may not help.

The bacoflen and lyrica don't seem to be helping at all. I did ask them why haven't they done a brain MRI and they said well because your symptoms don't warrant it. Nothing is around your head, numbness etc. I then said well you see that people have numbness in legs and they are given MRI of the brain from the start. They said you can request it and they probably will do it. I think it's probably an insurance issue and they don't want it to be not covered. I have a PPO so that shouldn't be an issue. Blue Cross is amazingly hard to deal with sometimes. I had a really hard time getting Lyrica for unknown reasons. They wouldn't approve until I tried everything else. So maybe I will go that route it I get no explanation from the Rheumatologist.

At least I am getting quick doctor appointments instead of having to wait months.

heya, updates sound frustrating. had you seen the questions i posted above?

rluck9974 wrote:I did ask them why haven't they done a brain MRI and they said well because your symptoms don't warrant it. Nothing is around your head, numbness etc.

That has to be one of the silliest things I've read.

Yeah I agree and the fact that I have hyperreflexia in my legs should have been enough to warrant a Brain MRI or at least a Thoracic MRI of my spine. I guess it's just a wait and see what happens but considering I do have joint swelling and pain in my hands along with thigh and hip pain maybe the Rheumatology is a good direction for now. Whatever, my deductible is almost met for the year. I do kinda of feel like I am not taken seriously sometimes because the fact that I am in pretty good shape and when you look at me you really wouldn't think anything is wrong. I don't have any considerable weakness except maybe my left hip which was only discovered last visit. Even then you have to take that with a grain salt because I am right handed so my right side is always going to be stronger and the doctor was pushing down with full force and I was seated. Who really has that much strength in their hips to stop someone from forcing your leg down when you are seated?

It does sound like you are getting good care and the doctors have your best interest in mind. For me it is a different story in this state. I went to my primary last week and she says over and over again that brain lesions can't cause my symptoms nor can infections. Then she tells me I need to go to an academic institution like UCLA to get answers. I asked her about seeing a rheumy and she said I have already had all the test so that would be a waste of my time. Like you, I feel she is either not really telling me what she thinks of she is protecting the insurance company. She went as far as to say insurance won't approve drugs like Lyrica. It's all so confusing when one doctor says one thing and another totally contradicts those statement. So much for continuum of care anymore.
One thing I have learned about MRI's is they aren't that expensive especially in Nevada. You can cash pay here for a good 1.7T machine for less than $400. There are websites that can assist you in finding one in So Cal if you want to bypass insurance all together. You should at least get one of your brain. I have the same insurance as you though and they have been pretty good about approving the MRi's. Maybe because I have a high deductible PPO.
Anyhow, I am in the same boat as you when it comes to looking totally normally. Plus my friends and family can't believe this is happening to someone that was a hardcore workout nut prior. They think or want to believe I am faking. I can't tell you how many times I have been told to get over it and live my life. I can only imagine what a few of these doctors have thought when seeing me for the first time. Probably something like here's another guy seeking opiods and benzos.
Let us know how your visit with the rheumy goes. I had an ultrasound exam of my legs today to look for clots. It was totally normal. What a surprise.

Well I did visit the Rheumatologist in September and then again in October. The first visit lasted an hour and a half. He is a new doctor so he asked at least 100 questions and had me repeat my entire history. He said I think you have Fibromyalgia based on your symptoms and the fact that you have pain in trigger points. I was like whatever because I don't think it is but I guess you have to eliminate other issues first. He then ordered more blood tests looking for rheumatic diseases. Those test of course came up negative. The next visit in October he wasn't so excited to see me and then said I don't think you have fibro because certain autoimmune tests all came back negative and although you could still have Rheumatoid Arthritis, it's unlikely because the tests came up negative. Btw, for you vitamin D 25 Hydro lovers, test came back at 37 which is considered normal. Also had HIV and Hepatitis tests that all came back normal. I wasn't expecting anything different. He did say that he didn't read the Nuero portions of my records until after my first visit and advised me to continue with my next Nuero appointment in January. After that I obtained my medical records and the Nuero is leaning towards SFN based on my symptoms and progression. Progression as it seems to be getting worse. Pinching feeling in my thighs, numbness, stiff muscles, stiff neck and general pain after any amount of exercise. I did have a few days where I didn't feel any pain at all but it just came back out of nowhere in my legs. I am not out of shape and I have been a gym goer for at least 10 years so it's unusual for me to feel pain after exercise or even at rest. Lyrica and bacoflen help but only to an extent. Short update on my alleged Small Fiber Neuropathy. I guess it's wait it out and see what happens because it appears that's what they are doing. Still haven't received a MRI of my brain or thoracic spine. Don't know the reasoning for that. Next visit is in January. One good aspect is the Rheum sent me to a Ophthalmologist because I said it feels like my eyes are dry. He diagnosed me with Dry eye syndrome and gave me a bunch of steps to follow, high potent fish oil, eye drops, eye lid scrub. It has helped dramatically. First time I can remember where my eyes didn't feel dry. At least something is working.

i have classic stocking and glove sfn it's not going anywhere and that particular sensory loss is my most noticeable day to day reminder of ms.
has nothing to do with muscle issues in my case. all numbness, and subacute combined degeneration of spinal cord. luckily, not getting worse just plateaued after fixing the ataxia component (that part was *really* debilitating).

you might find this interesting. it's an oldie (2010) and surfbird does have an official msdx (even though they said CIS originally, not sure what might have been going on since...) but the content here related to symptoms after exercise still may have some potential relevance:
http://www.thisisms.com/forum/general-d ... ml#p131638

you may also be interested in recent related discussions w daniela who's also very active and going through rounds of testing of various kinds to figure out where her symptoms could be coming from
http://www.thisisms.com/forum/undiagnos ... 28500.html

oh and also this one from the exercise and pt forum
http://www.thisisms.com/forum/exercise- ... 28296.html

Thanks for the info. Merry Christmas!

you too! good news from daniela (sort of!!!) all spine issues, no brain.