Browsed by
Tag: myositis

Coma sleep, with a side of hot burning legs please

Coma sleep, with a side of hot burning legs please

I don’t want to order that but it’s been on my plate now for a few months.  I’m starting to get really discouraged and depressed.  My Rheumatologist wanted to see me the next time my hands blew up.  (they actually blow up, it’s gross) So anyway, I’m flaring really hard and always as a precursor to a flare, my knuckles get really red, like shiny red, my eyelids become really swollen on top and hang over my lids (gosh I feel sexy just typing this…) and then my hands start to split open all over the place.  Sometimes they swell in my sleep, sometimes not, but either way they are monstrous.  Soooo, 2 weeks ago my hands start up again.  But I forget I’m supposed to go in.  Towards the end of the monster hand I remember and call him up.  I get to see him the next day and they are pretty much healed.

He says he can still see the damage and it looks like the dermatomyositis.  Okayy.  He ran the whole shebang of labs; ANA, sed, C-reactive, Comprehensive Chemistry, RA factor, and anything else he could scribbble in.  So I call this morning to find out the results and the nurse comes on the line and tells me that Dr. wants to speak with me personally and set up a plan of action.  So I wait. And wait.  I’m thinking all of the worst things imaginable since I am such an optimist at this point in my life….why in the hell couldn’t she just tell me the numbers, she always does… finally I call and tell the receptionist I am in the throes of anxiety waiting for the call.  She informs me in an official tone that ‘Doctor is still seeing patients and cannot come to the phone. He will ring me after 5.’  Well, luckily I went back into my coma sleep so I didn’t have to smack everyone’s hands off the phone.  I so smartly decided months ago to cancel call waiting because it bugged the crap out of me whenever I was on the phone hearing that beep beep beep, only for it to be a telemarketer, or bill collector.  Right at 5 he calls and tells me that other than my ANA being positive, all of my numbers look pretty good just like last time.  He says we’re damned if we do, and damned if we don’t.  I don’t ask him what we’re damning about because I’m pissed that I worried all day for this.  He told me the plaquenil could very well be keeping my numbers at bay. Well, it’s not keeping my symptoms at bay.  I’m sick and tired of being sick and tired.

When I first came to him before I got on any meds, my numbers were through the roof and I couldn’t walk without assistance.  My PCP told me I had Lupus (prematurely based on one lab test) and my Rheumy was hesitant to say for sure what we were looking at; RA with some dermatomyositis and palindromic rheumatism thrown in for good measure.   That’s what the labs and symptoms told him.  Now he says the plaquenil is working, I’m walking much better, my numbers are low but I’m flaring more often than not.  I’m frustrated that I get a diagnosis, then have it taken away.  Again and again.  Right now I’m back to Undifferentiated Autoimmune Vascular Disease or Undifferentiated Autoimmune Disease, Connective Tissue Disease… Then it will be MCTD, then back to the early RA with dermatomyositis and so on.  Never in my life have I WANTED a diagnosis, til now, I just want to make sure I’m on the right meds for the right disease.  I don’t want any joint damage.  We tried methotrexate but it made my legs freeze and burn right down to the bone so he discontinued that but didn’t try anything else.  One thing he says he is sure of is it’s not Lupus like everyone thought in the beginning.

Is this a rambly confusing post from a frustrated woman?  Yes.  I haven’t posted much of anything lately because I have just been too sick to even want to sit down and type.  But last night I couldn’t sleep a wink after 1:30 so here I am!  I’m going to post a pic of my hands when they were on the mend.  You can see the rashy red spots, but there were no splits in this shot. I also got turned on to a video on myositis, it touches on the basics, but it’s interesting and it’s good to see someone talking about it.  And last but not least, I  posted some more photos in the Happy Snaps.  Those are cool and stress free, LOL.  Every shot I’ve gotten so far has been right in our yard.  I’m lucky to have such beautiful flowers pop up.

Today will be a better day!!

Until next time

Pass the buck please, not… (a rant)

Pass the buck please, not… (a rant)

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

Michelle

%d bloggers like this: