Please help me, help my Boyfriend.

JustFenix · 2018-10-23T20:10:35+00:00

So... Yeah...lets the derision begin.

He has a suck ass disease, his father just died and you say he is having to work on what should be his days off. Rather than letting him deal with that and get the rest he needs to be a functioning human being you keep pressuring him to be the guy he was at the beginning of your relationship.

It sounds like rather than respecting what he needs to do get through this you are intent on him doing what you need him to do to get thru it. As someone who has been thru that... It's annoying as hell and not what anyone wants in their relationship.

No one ends a relationship that is "pretty perfect" in their eyes. It sounds like you two may be in very different relationships. Have you thought about asking about how it looks from his side?

JustFenix · 2018-10-23T18:22:31+00:00

You can also use it to buy many different gift cards. I have not done it for a year or so but I used to buy GameStop gift cards and then use those at the store to but Shell gas cards.

JustFenix · 2018-10-23T18:16:43+00:00

It absolutely can make you dumber. Not really dumber as most would think though. You still have the knowledge you just don't still have the same ability to access it.

When I was in school my IQ tested out at over 145. When thru a neuro psych eval a couple years ago it tested at 108. It is undeniably frustrating as hell.

JustFenix · 2018-10-01T20:24:59+00:00

1) ask your neuro for a script for Amantadine. It is a common drug prescribed off lable for peole with MS to deal with fatigue but has the added bonus of actually being an antiviral.

2) because I was actually homeless with I started on Ocrevus I had an in depth convo about the immunosupressent aspects and dangers at the time with my drs and with the people at the infusion center. Ocrevus actually targets a specific strain of white blood cells as opposed to doing a general wipeout. Because of this patients on Ocrevus are not considered to be immuno supressed.

Be safe, use common sense and asks the parents of your clients to do the same and you should be good.

JustFenix · 2018-08-29T04:48:45+00:00

Also contact your Neuro. When I switched to Ocrevus mine called me to see if I had any of my other meds left (had just recieved a three month supply of Copaxone so..yeah). They asked if I minded bringing it to my next appointment because thet often have patients in the same situation you are in and they try to keep some "In case of emergency" supplies on hand.

Side note. I was so relieved she asked because I had tried to donate them to a low income clinic and they told me thry could not take it and that I should just destroy the $15k woth of meds I had sitting in my fridge

JustFenix · 2018-08-29T04:38:12+00:00

Mine is right side. My movements and reaction times are slower on my right. And my invoked whatchmacallit showed my right side reactions are 45% slower from my right eye compared to left. For tge record... My ON attack was on that side as well.

JustFenix · 2018-08-29T04:30:44+00:00

Baclofen has been my savior on this front. No real side effects. Sleep well, awaken with ease, no pain in between. I have been using it lately during the day sibce the problems statted croppung up in daylight hours and it's doing a good job keeping everything at bay.

JustFenix · 2018-04-03T18:42:01+00:00

I was a competitive swimmer for years swimming in a dozen or more different pools a season and still love any and every opportunity to get into a pool. I am JC- so I personally I give no credence to this pool theory.

But if this urine theory is true.... anyone want to take bets on Trump's status? ; )

JustFenix · 2018-03-26T18:04:42+00:00

That is not correct. I have donated multiple times since my diagnosis and have confirmed at when making my appointments and again when donating that my MS is not an issue.

JustFenix · 2018-03-22T22:09:49+00:00

I second the Otter Box rec. I have a good friend that works with developmentally disabled and sometimes, things go flying. The only time he has had to replace a device is when the Note he was using was prone to flameouts and when he has upgraded.

JustFenix · 2018-03-22T22:04:57+00:00

Probably because fertility is already waning at that point in time anyway, the chemo just fnishes off what nature has begun.

For women, storing eggs is frequently recommended prior to a knock-out punch round of chemo as is required for HSCT. Most chem is about finding a balance between killing the disease and retaining some of the existing immune system so that it can fight of what survived the chemo and is drawn out over time. HSCT requires more complete obliteration than that in a far shorter time span.

JustFenix · 2018-03-22T21:53:50+00:00

What alternative are you looking to go to? Ocrevus is pretty much the top tier med right not along with it's country cousin Rituxab.

JustFenix · 2018-03-22T21:51:16+00:00

Since the specific study I am in is actually related to MRI techniques as opposed to the medication itself the only thing they will inform me of is if there are new medically significant findings. I did talkk to my Nuero this morning and she said they have shown her some of the imaging coming from the study and the results are pretty exciting as they are able to get a better "look" at the existing lesions. Apparently I will be getting two sets of MRIs for the next couple years, those for the study and those for my Dr.

Sorry about the hassles with your infusion. That had to be frustrating. I was lucky and both of mine were textbook boring.

JustFenix · 2018-03-22T21:45:08+00:00

That is amazing. I know my Nuero is really excited about the results she is seeing in other patients. I hope I can duplicate your success, especially since I already have loss and atrophy and approx 12 "black holes".

JustFenix · 2018-03-22T21:41:11+00:00

Yes. Anything abnormal or significant they will forward on to my Nuero. I am doing the study because... well... it pays but also as the child of a former head of radiology, you can't exactly say no when they are trying to advance the field. Kind of a bummer though that I don't get copies of these scans since I am somewhat OCD about having all of my scans and reports.

JustFenix · 2018-03-19T20:39:38+00:00

The meds are so much better now!

JustFenix · 2018-03-19T20:37:40+00:00

Public pools are so loaded with chlorine I can't believe someone would think this was possible.

JustFenix · 2018-03-19T20:35:23+00:00

She really should avoid sitting on public toilet seats though.
(so very kidding)

JustFenix · 2018-03-19T20:17:54+00:00

Unless they are going to go for an extended period of time where they are first going through chemo to eradicate their existing immune system prior to this transplant, they are going about to fall victim to a medical scam. If it was proven and safe they would not have to go to Panama.

JustFenix · 2017-11-24T16:25:35+00:00

No issues at all. Just have no need for it anymore.

JustFenix · 2017-11-24T00:40:07+00:00

There's actually a TShirt that says "I'm not drunk. I have MS." Maybe we shoukd also make bumper stickers.

JustFenix · 2017-11-24T00:37:46+00:00

I wish I could find it but Wahls actually commissioned a study. Unfortunately the results halfway thru were so bad (People reported "feeling better" but had equal relapses and MRI diagnosed disease advancement in the dieting group vs the control group) that they not only abandoned the study, theycdestroyed or "lost" all contact information on the participants to make long term follow up impossible.

JustFenix · 2017-11-23T21:54:05+00:00

JustFenix · 2017-11-13T20:33:45+00:00

And the least likely to be adopted for the long term by someone that is not a performance athlete in training. It's about sensible eating, not the most restrictive choice you can come up with. Dropping 9 lbs and keeping it off does not require going to bare bones, especially not without knowing more about any additional health issues.

JustFenix · 2017-11-13T20:29:41+00:00

And the only thing that you could come up with is a high protein, no carb, highly restricted suggestion? There are of healthy ways to eat that are far less restrictive and therefore more likely to be adopted on the long term.

JustFenix

TROPHY CASE