MRI IV Bruising

I had an MRI a week ago. I spent a week and a half drinking at least 64 oz of water every day. And it seemed to have paid off a little. The IV only needed one poke, even though she had to squirm it around a bit so it hurt a lot and bruised.

I had to get my brain and spine done with contrast. By the time it got to my last round (spine with contrast) I couldn’t stay still. My muscles kept giving me spasms. 

I got the email with the written results, and it reconfirmed that I had moved too much for the spine. Which is unfortunate because it’s what the doctor wanted to see. Oh well. 

This is today, a week after the IV:

A couple of days ago, I noticed the bruise moving toward my hand:

The day after shot, after I took the bandage off:

At home, day of MRI:

Go go medicine

The last time I saw dr W. was for my eyes a couple of weeks ago. While I was there I also mentioned my incontinence and fatigue reaching a low point. He gave me something for the fatigue and it has helped greatly. The stuff I was on before is still have to have coffee with it to make it through the day and that was just not cutting it. So I’m glad I’ve switched. I haven’t had any caffeine since starting it and I’ve even been able to get up and do my Bible study in the morning. It’s still hard to wake up but once I get going I’m good until around 8-9 pm. I probably start lagging around 5, but don’t notice it as much with dinner and bedtime routines happening. So glad I switched. 

Macular Edema

Post dated: December 20, 2017

So I have macular edema. It started about a week ago. I noticed it at the last day of bsf for the semester (December 12, 2017) that there was a spot in the middle of my vision field in both eyes that was gray and blurred out. I tried to wait it out, which I regret now, but it seemed like a good idea at the time. Got an appointment at the eye doctor yesterday and he said everything looked fine. But obviously my vision was impaired. So he suggested it be neurological and I see dr W. So I did... today.he looked at my eyes. Had me do a vision test on a screen looking at what must have been a dot or square then looked in my eyes and said That I had macular edema due to the gylenia. Great. So now I have three months to rethink my plan of attack for MS. I’ve stopped taking it right away but now it’s back to the drawing board. I really don’t want to do shots again. So there are two other pills out there that might work for me. I just have to learn more about them. If y’all have any info about the pills for relapsing remitting MS please let me know!  

On a good note I did get something to help me stay awake during the day. So there’s that. 

Positive Results for FTY720 - MS Oral Drug!

I got this update in an email today. It's also available from the NMSS site. It's exciting to see the results going so well!

Sep 30, 2009
Positive Results Announced from Phase 3 Trial of Fingolimod Pills in Relapsing MS
Novartis International AG announced today that oral FTY720 (fingolimod) was able to significantly reduce relapse rates and slow disability progression over two years in a large-scale, phase 3 trial involving 1,272 people with relapsing-remitting MS. According to a company press release, safety data confirmed a positive benefit-risk profile for the lower of two doses tested, and the company plans to submit applications to drug regulatory agencies for marketing approval of the potential therapy at the end of 2009.
Background: FTY720 binds to a docking site (sphingosine-1-phosphate receptor, or S1P receptor) on immune cells, including T cells and B cells, that have been implicated in causing nervous system damage in MS. The drug appears to induce immune cells to remain in lymph nodes, where they can do little harm, preventing them from migrating into the brain and spinal cord.
Positive results from an earlier phase 2 study led to several large-scale phase 3 trials. Initial positive results from the TRANSFORMS study, comparing two different doses of fingolimod with Avonex® (interferon beta-1a, Biogen Idec) over only one year were presented at the American Academy of Neurology meeting in spring 2009. Adverse side effects seen more often in the fingolimod treatment groups in this trial included temporary reductions in heart rate at the start of therapy, small increases in blood pressure, and a few cases of macular edema (swelling of the back of the eye). Two deaths from herpes infections occurred in the group taking the higher dose of fingolimod, and seven cases of localized skin cancer occurred in the fingolimod groups.
This Study: The FREEDOMS study involved 1,272 people who had had symptoms of relapsing-remitting MS for an average of 8.2 years at the start of the trial. The participants were randomly assigned to one of two different daily oral doses of fingolimod or inactive placebo. The primary endpoint established for the study was the rate of relapse. Other endpoints measured included changes in disability progression, safety and disease activity detected with MRI scanning of the brain.
According to a company press release, results showed that after two years, the drug significantly reduced the annualized relapse rates by 54% (lower dose) and 60% (higher dose) compared with placebo, and reduced progression of disability by 30% (lower dose) and 32% (higher dose) over placebo. In terms of safety, the press release stated that there were no cases of macular edema or melanoma in those taking the lower dose, but further information about these potential adverse events was not provided in these initial results. There were reversible elevations of liver enzymes, lung infections, and mild elevation in blood pressure observed in those on active therapy. Three people died during the trial, one on the higher dose and two on placebo, but these deaths were not thought to be attributable to the therapy. The press release states that future development of FTY720 will focus on the lower dose.
Further details about both benefits and adverse events are expected to be released at an upcoming medical meeting in 2010. Other phase 3 clinical trials of fingolimod, including one involving people with primary progressive MS, are still under way, as are extension studies involving those who’ve completed trials. These should provide additional data on safety and efficacy.
Comment: “This is potentially a breakthrough study, and we look forward to seeing further details when they are available,” said John R. Richert, MD, Executive Vice President of Research and Clinical Programs at the National MS Society. “Having oral therapies in the MS pipeline is real progress, and it should increase the number of people who choose to begin therapy earlier and who stay on therapy, which our experts say is the best way to combat future disease activity.”
Avonex is a registered trademark of Biogen Idec

Sinus Sickness

I've been sick for a number of days. I'd say since Wednesday night. Wednesday the 16th. So, yes. It's been over 7 days since it started. I was going to get my fluu shots done, but it seems that since I'm since I'm not going to. It wasn't supposed to last this long, urgh. It sucks, but it's getting better every day. It was getting worse, but now I'm better. It's just major drainage. I wasn't able to lay down, I had to sleep sitting up, which is not that comfortable. I was waking up every couple of hourse, and still do, but now it's every four hours, not two. I'm taking all sorts of medicine, yes meds that are okay for preggers. Tylenol and some Sudafed. It was so bad I actually struggled to breathe a little bit without coughing when I was sleeping. I was grinding my teeth to ease the pressure, but that's not good, so I even had to go get a mouth/teeth guard.

Myself

I haven't been feeling the best about myself lately. I haven't been feeling ill, per-see, just not myself. I can tell I'm not on the manic meds, and I'm noticing a reversion back to who I was, and not that I didn't enjoy being myself. I just feel I've matured since then. Now, though, there's a sense of undoing. I don't want to be on the medication while I'm pregnant, so I'm just having to keep a closer eye on myself. It's an odd concept, and I'm not sure many others understand. It's hard to explain. There's two sides of me battling for the rights over who gets to control me. Just imagine the little devil and angel on each sholder. That's what it's like.

Reactions

Okay, so I wasn't feeling well after all the tests on the 18th. It's the first time I've had a reaction to the flaire dye from the MRI. But then after I got home, I was feeling really bad in the stomache. I got nausias and diariahe.
I also noticed a bad reaction to the ECG stickers. They were really itchy towards the end there, and I noticed once I got them off that I was scaring. Even after I've showered, they're still a bit itchy, and it's hard to ignore. But they're getting better now. But there are a few that are raw and scared. Chris has washed them with alcohol, but... anyway, I've started putting Neosporine on them, hopefully it's not too late.
I noticed that my throat was itchy. It was hard to not caugh while I was laying down for the MRI. If I remember right, I caughed a bit with the asthma medication on the 16th. The caughing got worse, and my throat is really raw now.
I wasn't able to go in to work on Friday because it hurt so much. I was dizzy with vertigo, and had a headache. It wasn't good. I spent the day sleeping myself well while trying not to move too much.
I still have the coughing and the vertigo. But Chris got me some caugh supressant and it seems to be slowing them down. Hopefully I'll be ready for work tomorrow.
The thing is I'm not sure what the coughing/itching is from. I have a few theories. 1) A number of people at work, especially the ones I work closesly with, have been sick the last couple of weeks; so maybe I got it from them. 2) The asthma medication. 3) Just another bad reaction from the MRI Flair injection. 4) I have a weakened immune system due to all the running around poking & proding my body for all the tests.

More Doctors

Today was another long day. It started at 8:30am with meetings with my physciatrist and psycologist. That took a total of 1.5 hours.
Following that I had to redue my labs. Ugh! They hadn't pulled all the viles out, so the didn't have enough blood for the tests. Yup, they had to do it twice.
After that I had an MRI at 12:30 pm. I was told I could get a topical numbing gel put on my arm for where they were going to have to do the injection, as well as getting an anti-anxiety pill. They didn't give me either though, because I was told to arrive 30 minutes before, and when I got there they told me, it had to be an hour before. Grrr!!! So mad was I! They did put a towel over my eyes so I couldn't watch. Anyway, so I had to have the regular MRI, and then one with flair (the dye injection).
After that I had to have a chest x-ray. They also made me breathe normal, hold my breathe, and do deep breathes. It was all in the same place.
Then I was swept over to the neurology place to do an ECG Test. For this one they just did a blood pressure test and then hooked me up to a heart monotor for 24 hours. I was able to go home with a traveling monotor. I had a whole bunch of stickers all over my body. Ugh, but at least I could take it home with me.

FTY720 Visit 1

Okay, so I'm getting ready to start the drug tests for an oral MS drug. On Sept. 9th I met with Nancy the Neurologist and went over the paperwork. It doesn't seem like that big of a deal, but it took a lot longer than I thought it would. It turns out Fingolimod (FTY720) has a few side effects that made me a bit worried.
The biggest thing about Fingolimod is that it moves the white blood cells, which causes the immune system to be weakened. It's bad enough that MS causes the innune system to be weakened, now I'll be taking something that causes it to be even worse. Grr. Oh well, I'll just have to up the vitamin dosages and such... and take extra shots, for flu and such.
The other thing that really really worries me is the birth defects as a possibility. That really scares me and makes me worry about the future. Is it worth it, I think? I keep thinking that maybe I should wait and go ahead with hmy life. But I still go on with heading towards the trials, thinking of I'm not supposed to do it, one of the tests will turn out negative, and I'll have to drop out. It's hard to not think about. There's only been two recorded cases of birth defects, and they might have not properly gone off the medication before getting pregnant. But it still worries me.

Oklahoma Allergies

One bad thing about moving back to Oklahoma is the allergies. Both Chris and I are experiencing bad allergies of the nighttime. We both caugh really badly, and when we breath, it sounds like we're whistling. It is not good.
It got so bad I went to Walgreens last night and talked to the pharmasist. He sugested Musinex DM, or the off brand, so we got the Walgreens brand, and it's worked great. It does knock you out, so watch out. I'm still stuffed up in my sinus cavities, but not as badly... I can at least breath through one side. As long as I don't breath out my mouth I don't whistle, and it doesn't hurt like it did.
I'm still going to try and get us both in to see an allergy specialist. I think I saw one here in Owasso.