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