[chaos]

Over the past few weeks it seems one thing after another is going on. Yesterday I left a message with UCSF's MS dept after calling their Neuro dept to check on cancellations. They called me back, but I missed the call and they didn't leave a message (so I assume they'll try back).

I'm having a really hard time concentrating at work, but thankfully my bosses know what's going on and they're really great, but they don't know how bad my concentration really is. I'm super tired all the time, especially ever since that stupid propranolol I tried, I just can't shake the fatigue. My hand is shaking, I'm running into things like door jams as it seems my aim is off. My speech has slowed down again, I can't seem to do anything at home except sit on the couch or try to sleep. If I get any energy I feel like i need to get something done while the energy is there. And no, it's not really hot here right now. I know there is yet another med that can help me with fatigue, and other I need to try for the tremors (it's okay, you don't have to name them, I have that info).

My PCP won't/can't do anything for me because it's just not his field. I get it, that's fine. I want to cry all the time but can't, I want to be happy but can't, I think it's one of my meds is being a bit too antidepressive. I can't think about anything except what's right in front of me.

I have been doing things that are good for me, eating good food, not stressing, but don't have enough energy to do things that I'd like to do physically.

I really feel like I need treatment. I want to go into a bubble, get what I need, sleep a week straight. When I had the hives a few weeks ago I got Prednisone and that not only helped the hives, I felt a lot better overall, my PN felt better too.

How do you hold on during times like this?

I can't wait another month and a half to just see the neuro. I can't take time off work because I'm the only income in our house as well as being an important part of a very small staff at the office. I don't even want to just call in sick because I feel like I'd do that every other day. Even last night DH rubbed my legs because they were bad and all it did was hurt.

[NurseNancy]

gosh chaos,
i feel for you. i wish i had a great answer but i can only sympathize.
don't asume the office will call you back. call every day. you may get lucky.

you may also be going thru some kind of flare. the fact that the predisone helped makes me wonder if some steroids may help. but, that's one for the dr.

i'm glad you have your dh for support. give yourself permission to just do what's most important. don't worry about anything else. like just the basics to keep you working. please let us know how you are.

[chaos]

I think I'm in a flare. I asked my PCP about IVSM and he said I'd need to get it from a Neuro. Mine retired and I'm just waiting for the new one.

I did speak with the MS dept, she said I needed a referral sent over and it would only take a couple weeks, not a few months to get an appt. So now I'm waiting to make sure that happens, left a message with the pain doc that did the MRI to get the referral sent over.

The nurse that answered the phone (not a receptionist) didn't brush me off, said to get the info over there. Good that I was listened to, bad that she agreed I should get in there.