It’s been a couple of days since I’ve written. My body has been under attack by my body… I really hate this, it’s so frustrating!! I saw my neurologist a few weeks ago for my burning that I have. It’s mostly in my legs, but it travels. I’ve been taking Neurontin for it for a while with no relief. So, the neuro prescribes Lyrica (which is helping) and draws blood, sets up an MRI, and orders a punch biopsy to look for small fiber neuropathy. Well, I posted already about my MRI results, clean, yeah! I’m still waiting for the call for the biopsy, it’s a referral to a specialist in one of the best hospitals in the Pacific Northwest. I was told, ‘it’s takes some time to get it’. Okay, if there is anyone who can tough it out and wait, it’s me. I’ve gotten used to the waiting game when it comes to anything that requires a referral. sigh. SO, a few weeks ago I called to get my blood results back and was told by the nurse that “everything looks fine”. I should have asked for a copy of everything.
Fast forward to last week. My legs decide to give out on me. When I go to stand up they shake all over and I am week as a cat. I’ve never experienced this symptom before and it scares the shit out of me. I had a routine check up with my rheumy that week so I discuss the weakness and the pain and he tells me that it sounds like a neurological problem and that I need to see my neurologist about it.
The next few days are pure hell as the weakness changes into full muscle tightness, not like a cramp, but my entire legs muscles harden up like a rock and it is so painful and awful. I can hardly walk and they tighten up like a rock and deflate and tighten again. It coincides with a weird headache behind my eyes and I’m having a hard time swallowing. I finally get in to see the neuro and he looks at the labs from my previous visit and tells me that my sed rate is sky high. He also tells me that he will push for the referral to move faster so I can get the biopsy for the burning, but the new locking up of my muscles is an autoimmune issue and I need to see my rheumy. I’m pissed. When I saw the rheumy the previous week, I had asked for him to draw a panel, and he said no, not yet in 10 weeks. He didn’t think the symptoms I had were rheumatological, so, no bloodwork. In the meantime, my sed rate is severely elevated and he doesn’t know it, I don’t know it, and apparently neither does my neuro until I sit in his office on Friday and he says, “huh, look at that”. I could strangle his nurse for telling me everything is OK.
Why don’t doctors listen to you when you tell them you know something is wrong? I know my body better than anyone else. And I’m not a ‘panicker’. I’ve been trough hell and back this past couple of years and I think I’ve been a trooper. If there were proper communication between my docs I would be on something more than just the plaquenil and prednisone to combat whatever is happening to my muscles.
Now, I have to wait until Monday, have the neuro’s office fax my sed rate results to the rheumy’s office-THEN they will see me and draw my blood and take the next step.
Rant over. Aren’t you glad? LOL
I found a really good video on mysotis which is an autoimmune disease that effects the muscles. Here is the link 🙂
until next time