So onto the next round of tests 6-21-10

Dear all -

Despite protestations that I wait until I know more before writing, there's more than enough to write about later once a diagnosis has been made so I wanted to share what happened in the last week.

Very stressful personal event on Monday night - couldn't fall asleep so didn't get to bed until near 1 a.m. Rolled over in bed on Tuesday at 5 a.m. and woke up to agonizing horrible pain in my arms - could barely lift myself up out of bed the pain was so bad - even worse, it was worse lying down.

Got up, rubbed muscle cream into both shoulders where the pain was centralized but any movement in any direction caused infinite pain down my shoulder to my elbow. I screamed multiple times in the shower - scared the heck out of poor Sumi Lou. I figured it must be the MS being exacerbated by this other personal situation that occurred Monday night.

However, a similar thing had happened in Washington D.C. at the beginning of May - only there I was trapped in a hotel room and conference and I could barely do anything to get through that conference because the pain was so bad. So I have had this excrutiating pain on and off since the beginning of May (in addition to the major hand problems/stiffness/pain) that I have been fighting with since September 2009.

Anyway though, nothing I had experienced to that point on Tuesday morning was anywhere near as bad as Tuesday morning. I went to work but had to work like a T-Rex in a clinic setting. Moving only my arms from the elbows down - no reaching, no lifting, only close-body typing or writing - couldn't hold a phone or anything. The pain was more unbearable than I could comprehend.

Got an appointment that evening with a nurse practicioner at the clinic where I work - she said she's never seen anything like it. She said I either tore my rotator cuffs on both sides of my body at the exact same time in my sleep or it must be the MS.

Most providers really like to say, "It's got to be the MS".

So I made an appointment to see my neurologist, the "MS Specialist" for Thursday afternoon. Worked with no functional arms Tuesday, Wednesday, and Thursday. Went to the neurologist on Thursday. He evaluated me and said at least a dozen times, "I have no idea what this is. This doesn't make sense. This ISN'T the MS."

Talk about not helpful. The regular providers are saying, oh it's MS. The MS expert says, I have no idea what this is but it is definitely not MS. I was so sad and dejected and so I said, okay, let's forget about deciding what the cause is, tell me how to function because I CANNOT LIVE LIKE THIS.

So Dr. Hentati told me the plan of action - he would do some blood tests to help get to a cause and do some thinking about it. Even suggested that I could be developing an allergic reaction to the MS medication! But he said he has never had a patient who has done that in all the years that he has had patients on the same medication as me. However, he also said he has never seen someone with such tremendous pain and immobility on both sides of the body happen so suddenly. He decided it was definitely not a neurological issue. So he sent me for lab tests, then immediately to IV steroid treatment.

So I did an IV infusion on Thursday night of steroids, and honestly I woke up on Friday morning and I felt so much better. The pain, while not gone, was seriously diminished - the functionality had returned, it was like I was a new woman in that regard. Even my hands that have been barely functional were much improved.

Sadly, I am on so many different meds these days that I think I always get a lot of side effects, and the steroids are not short on side effects - mostly right now I have the insomnia, hyperactivity, nausea, hot flashes, and headache....I'm sure acne is right around the corner. But they do what they're meant to do - and for that I am extremely grateful.

So I was feeling much better all day Friday, on my way to my second IV steroid infusion, when the neurology nurse calls me and says only that my lab results came back very abnormal and alarming enough that I need to see a rheumatologist immediately. And she didn't provide me with any more information than that. I got the message when it was 4:45 on a Friday afternoon and there is no one in the world who is answering their phone who can answer any questions - what do these lab results mean? There's no one to schedule me, nothing.

So I started this weekend in full-blown panic and anxiety mode - I have just been given what could potentially be very bad news and I have no idea what it means or what I'm supposed to do with it. I was desperate, isolated, alone, depressed, scared, terrified, angry, sad, every possible awful emotion.

This whole weekend was hell....not knowing what the possibilities could be or how to tackle them. All my strength and ability to function just went out the window. I have never felt more alone. So I needed to write on Facebook about what I was going through because I had no where else to turn - I wasn't well enough to go and see anyone and no one was going to come see me and I had no answers....

Thank God my Aunt had a friend who is an internist who looked at my labs and called me and gave me some good advice in terms of mediating the side effects of the steroids. She said that there is definitely an autoimmune disease process happening that is NOT the MS - it could be any of a number of choices - some she listed were rheumatoid arthritis, lupus, some were less well-known.

My friend Jenn, also a doctor, then took a little look and came to similar conclusions - that it's not the MS - it's something else - the what else I don't know and no one will know without a more complete picture - some suggestions were polymyalgia rheumatica, polymyositis, RA, and lupus. But she was able to suggest some tests that would help figure this stuff out.

So this weekend was hell...I didn't know if I could make it at all....

But I did.

And this morning I was able to get an appointment with my primary care doctor for tomorrow (Tuesday) at 4:15 and with a rheumatologist on Friday at 10 a.m. So hopefully there will be answers soon.

I'll post when I know more.....thanks for all your love and support.