Looks like we're all having fun this week. I'll throw my 2 cents in.
Thursday is a full day of medical stuff, thankfully all taking place in the same facility.
8:00 - Blood draw. Doc will be waiting at the lab to take my 4 vials of blood to a special lab.
9:00 - Consultation with the NP to get updated on what has been going on last 6 months.
10:00 - Consultation with geneticist to go over findings and suspected abnormalities.
12:00 - Full Pulmonary Function Test, oh joy!
12:30 - More lung testing
Break
2:45 - Neuro clinic appointment and more blood work
4:00 - Spinal 3T MRI
Full day for sure. Hope I'll get to do some pleasure reading in between appointments.
-Julie
I was given a day time shift (8:30am-4pm) 2 weeks ago from the evening and night shift I was doing. Gosh what a difference it has made. ummmmmm normality! I feel the best I have physically felt in 8 months and I've been told by so many colleagues theres a little "glow" about me. My form is fantastic and my mood is good and positive.
My review with my neurologist (4 weeks post IV steriods) for a relpase was last wednesday. He was delighted with me and the recovery I made! When he examined me during relapse in A&E and did knee reflexes etc nothing moved on my left side especially my knee reflex. On review all is working and moving as it should and for that I am happy!
I did ask him about CCSVI but he was very vague. I had 3 things I wanted to discuss with him and recited the list for 4 weeks. 1) Tysabri, 2)CCSVI and 3) this overwhelming fatigue I have.
1) Tysabri: was a no go. Not comfortable with safety of it especially since I've tried no other DMD other than copax and I'm tolerating it ok. So were sticking with it. He hopes oral is just around the corner.
2) CCSVI: He's very cautious and I'd even go so far to say I felt he wasn't too hopeful just yet. So I didn't push.... CTEVD should tell us a lot more I reckon.
3) Admist all my excitment over how well I felt and my neuro exam going so well I forgot about fatigue. Ah well..... I'll address it with GP because I can do a 14 hour sleep no problem on the weekends and before I know it I'm husseling and bustling through work mon-fri. Even then I'm home at 5pm and all I want to do is sleep!
Overall doing well........
Going on hols in 9 weeks to toronto - very excited!!!!!!! Something to look forward to after 8 very difficult months.
Sharon.
This is the last week of the month long observation of Heart Health for women. We have one more activity on Wednesday, and then after Friday I can put my red away for another year.
I resolved to wear red everday this month and have pulled it off so far. This morning I was tempted by a burgundy shirt, but went with a red sweater instead. I can do this - only a few more days!
Kathy - I would take a dessert. You can never have enough sweets.
Mary - its great to have those young doctors. Hopefully their careers will span our lifetimes and we don't have to find news ones. I like it when we can break them in right! LOL
Mistylee - wait, just a little bit longer - it's the life of patients working through this diagnosis. I'm sorry that you still have this waiting game to live with.
Adjusting to trying Amantadine for fatigue; seems to help, though I'm a bit scatter-brained (more than usual, lol). Hope that gets better.
Wednesday, I see my PCP, learn results of event monitor for my heart (will remember to get copy!).
Friday evening, round-table discussion and potluck with my new MS support group; speaker from NMSS will join us. What should I take?
Saturday, Gentle Yoga for people with MS in the morning, then take Fluffy to catsitter, preparing for four days at time-share at Oregon coast. Ah, relaxing!
Physio on Thursday......waiting results of VEP and sseps, should be early next week.
Sigh.....waiting..waiting ...waiting!!!!!
Mistylee
I go back to my PCP on Thursday. It's the first time I'll see her since my MS diagnosis was confirmed by the MS specialist. She is just out of residency so should be boosted to know that her suspicions were right. She has been so great at getting me to the right resources. I am comforted to know she will be following my everyday health issues. (Let me change that to routine health issues. I certainly don't plan on having issues EVERY day!)
Mary