Well, I made it to the doctor's...
I did get lost, but I left early so that was okay. However, it took me about 30 minutes to find a space in the parking garage & I arrived about 20 minutes late. It turned out okay cuz the doc was running late, but I was really anxious about the BS getting there and being late.

The rheumatologist was very nice. He doesn't think that I have another autoimmune disorder (I agree) and he doesn't think the fevers are related to my joint pain. He said I may have fibromyalgia (disagree), or it is related to my MS treatment Tysabri (tend to agree).
He wrote a script for water PT- I think that will be good for me. I'm going to start looking for a place ASAP.

I called my neurologist's RN and left a message about the appointment & said I want to stop the Tysabri because I have covered all my bases and think that it's causing the joint pain- it can cause fevers and joint pain. Enough is enough.
My neuro will probably be very persistent about continuing the treatments. I've pretty much decided I don't want to. I don't think it's appropriate to give me a diagnosis of fibro unless everything else (including the medication reaction) is excluded.

I voted on my way home & I'm glad that's out of the way.

As far as money, I haven't even looked at my bank account since my husband spent that money. I didn't buy the curtains- I decided I need a new pair of sneakers instead- I ordered them on e-bay.

Thanks,
Kay

Dear Kay,


Good news about liking the rheumatologist!
You got a lot accomplished in that one visit.

Good job driving. I'm relieved when I get home from a drive to the city.

Do you have heat in your place yet?

M.

Kay

I'm glad you had such a productive appointment with the doctor. In my
case at this time, I'd much rather be diagnosed with the fibromyalgia. Than
be diagnosed with the rheumotoid arthritis. That is one of the reason's I don't have a arthritis doctor yet. But that will probably be changing just
as soon as I get my insurance back. But that is a whole different story.

I do know that taking the medicines I take help the fibro, and when I can
afford the massages it keeps it away better too. So I just hope that
it waits the next almost 10 days to return. I just can't afford it any sooner.

I was pampered with one every week to 5 days before. I just have that
tight of muscles. But this is the luxury I pay for.

Donna:grouphug:

Wtf
 

Hi guys,

Mari, I did get the heat back in my apartment on Monday, but I woke up without heat again today!!! I called again and they should be coming to fix it soon.
The maintenence guys have also half-assed some water and mold spots on the ceiling, and haven't fixed the leak and draft in my sliding door.
Yesterday one of them was in here and didn't lock the door behind them! I checked that it was locked before I left yesterday morning. I told the leasing office that too.

I'm still very worried about the abnormal pap and waiting for the results of the colposcopy. I have a history of very heavy bleeding and clotting. I've had bleeding again almost constantly for the last 2 months...

I spoke to the MS RN today about the rheumy appt., joint pain, and fevers.
I told her:
-I've run down everything else but the MS treatment Tysabri. Multiple visits and work-ups by pcp, 2 rheumy's, and the orthopedist.

-The pain started about a year ago, after the Tysabri was started...
and it can cause fevers and joint pain

-I don't want to keep throwing pills at the fever and joint pain unnecessarily. I'm very close to the upper limit on lyrica now (it's a newer version of neurontin), take tramadol/ultram, and a lot of tylenol.

-And I take a new drug for MS called Ampyra (supposed to work to help walking). It's not working for me & I want to stop it.

She thinks that stopping Tysabri for a month or 2 to see if the s/e's go away. If the symptoms stop we could either treat them and continue the med, or stop it. If the symptoms don't stop when we stop the Tysabri, we'll have to continue to look for another cause.

However, she'll be speaking to my neurologist right now- and the final verdict will be her's. I should hear back sometime this afternoon.

Donna, I have had the occasional massage, but it's expensive! I wait until I can't take it anymore before I will spend the $$$, since $$$ is always an issue.

Speaking of money,
I HAD to check my bank acct., but really wish I didn't. I'm going to have to go and ask my brother for a loan again. My husband gets paid on the 12th, but our car payment is due the 10th. Even with the loan, we still won't be able to make it.
I need to carry over money from one pay period to the next! I have to come up with a plan. It makes me anxious and sick to my stomach!!! :o

Waves inspired me to make a to-do list:
- call to get heat fixed- check!
- check bank acct.- check!
- redo budget- today
- look up pool therapy place- today
- call little bro and ask for a loan to get by- today
- call gyno and ask to be put on colposcopy cancellation list

- start the "dialectial behavior therapy" book the pdoc gave me
- put clothes away
- do laundry
-call pcp to update (after I hear back from neuro's office)

I'm sure I'll have to add to this list, but it's a start!

Thanks everyone,

Kay

Dear Kay,
You have had a very productive day already!

Try not to worry about the gyn. This stuff takes time and you have to go through one step at a time.

Dialectical behavior therapy is supposed to help you learn to deal with stress (among other things). :) That would be a good outcome I believe.

M.

Tysabri
 

Wow!
I looked up your Tysabri
That is a serious med.

Are you going to d/c Ampyra and Tysabri at the same time?

'Sorry. Not trying to ask a dumb question.

M.

I woke up again with no heat!!! I guess they've been working on it since earlier this week (probably after I bitched). The supervisor came over quickly after I called today and he got the heat on. Another part still needs to be replaced for this side of the building so it may go out again. At least for NOW it's on.

I called my little bro. last night & he doesn't have a problem loaning me the $$$. I'm going to see him today. It will help take some of the pressure off, but I'm still all worked up about all the financial BS.

My 1st appointment for pool therapy is next Tuesday! I got that out of the way yesterday, too.

Dear Mari,

Tysabri is a serious drug!

The RN called me back later yesterday. I am going to stop both Tysabri and Ampyra at the same time. I don't have to take the ampyra again, but the plan is to stop the tysabri for 3 months (Nov/Dec/Jan). I'm going to have IV solu-medrol once a month at a local hospital instead. I'll see my neurologist again Jan. 9th.

I did call to see if I can can in for the colposcopy earlier, but no luck. The receptionist said she'll keep an eye out for me tho. At least I tried- now I can let it go for now.

I think that the pdoc's workbook wil help too, but I'm sorry to say that I haven't gotten gotten past the intro yet.

Thanks,
Kay

Wow kay, it sounds like you have a plan for your ms management and glad that your brother was there to help you.
It seems like a very productive day, hopefully the heat will still be on tomorrow...keeping fingers crossed for you.
bizi

The cervical stuff is still plaguing me (amongst other things). The constant bleeding is an unpleasant reminder. Health insurance should be reimbursing me for all the tampons and pads I've been going through.

A lot of MS crap is getting worse. Briefly: swallowing problems, cognitive & vision problems. The symptoms were already there, but they steadily get worse. The cognitive issues are worse when I'm anxious.

I'm definitely depressed- no doubt about it- and anxiety is high.

I guess when you have so much **** going on, you sometimes get hit with everything as a whole...
So, the majority of the day I've been in pittyville. I know that it's not productive, and that life isn't fair, but can't I catch a break sometime- please?!

I've been SO tired all day. I shouldn't still be up right now (it's midnight here). It's taking me a very long time to post...
So, I guess it's time to sleep.

Here's hoping I wake up on a better side of the bed tomorrow (and the heat is still working in my apt),
Kay

Dear Kay,

The gyn doc is going to take care of you . . . only have to be patient for a little bit more.

I'm sorry that you are having a hard time. Sometimes I sort of join the pity party for a day or so. Then I try to get back to whatever I imagine is my real life.

I'm happy that your heat is working.

M.