Finally over my relapse

[SarahL2491]

relapse/flair, whatever.  It was 9 days of no fun.  They even refused my Tysabri last week because I had a fever of 99.0.  Am still on antibiotics for a UTI that I didn't know I had, which I think was really cystitis.  Anyway, I have 3 more days of Ciptro and Tysabri  is tomorrow.  Will make sure I take aspirin to keep any fever down.  I've been 6 weeks off Tysabri now.

Everyone have a good week,  I saw my sleep doctor yesterday and he said I was doing excellent on my CPAP and don't need to come back for 6 months………and I do sleep much better, I was amazed.

[SarahL2491]

They put my Tysabri on hold for 2 weeks until i was 98.5, ad the first afternoon it "kicked my butt" but felt much better the next day and doing ok now.

Sometiimes the little things are so frustrating!  They say its a Tysabri rule……

Thanks for all the help and encouragement
Sarah

[Joiedecour]

Sarah, don't know nothing about all that, but a 9 day serious relapse cannot be fun, so just adding my uninformed yet supportive voice to your post. Hope things continue improving for you .

[SarahL2491]

I have not found the OTC test strips reliable.  I had tested before for 2 days and only the leuks showed positive, not the nitrates.  The ones the doctors use are very expensive but the best.  I keep trying to get a script for them.  I did not know I had this UTI (I never do) and he gave me an IV antibiotic plus Ciptro to take afterwards.  He said it was a bad one, but my strips didn't show positive.

I found that my energy level improved with CPAP but I still had my MS fatigue, so between CPAP and Adderall, on a good day, I am feel super.  On Tysabri day, I feel like my butt got kicked and spend the afternoon on the recliner!

I did get my Tysabri this week!  I took aspirin to make sure (LOL) but it was 98.5.  Seems a fever makes Tysabri act weird or something.

I am never aware of my UTI until I get severe nausea or something, its a pain in the butt……and I have a urologist who is the best in blasting kidney stones (so don't want to lose him) but he knows nothing about MS or cares to learn……..someone needs to give me a script for Cipro to keep on hand………………

Thanks guys, you always keep me feeling better just answering me!

[Corriel]

Hi there! I am glad your relapse seems to be finished and I hope you got your Tysabri.

I have been using my CPAP for 4 years and I am encouraged that you find it helpful.

I did not notice a huge difference with mine for the first few years and during that time I received my MS dx. I think my ongoing fatigue was likely not related to the CPAP.

As for the UTI, you and Karry have me thinking about looking into test strips.

I had a bout with several UTIs within a few months before my dx and it isn't something my PCP or neuro ever test me for, even when I have an MS relapse.

I hope you are going to get over this one quickly,

Corrie

[karryon55]

I'm sorry to hear that Sarah. The UTI's do creep up on you though so I'm glad it was picked up but it would have been better to know before your MS kicked into overdrive.

I have just checked my urine today after trying about 5 days without self cathing (yes I know tut tut) and it looks like I have a UTI. I actually thought that I didn't have any residual happening now in my bladder but I guess I was wrong.

I'm cross with myself as I also go for my Rituximab tomorrow & they won't give it to me if I'm not well. I will see what tomorrow brings I guess.

I'm glad to hear the CPAP is working out well for you as well.

Take Care,

Karry.

[HVAC]

I am glad you are feeling better UTIs are tough. I am glad the sleeping is better.

Alex