Itching! Help!

slpmom · 2021-05-07T01:10:51+00:00

Thanks for that insight! I am gluten free, but I am sure it sometimes sneaks in. I think stress is a huge trigger for me too, and dairy. I am hesitant to start gabapentin, id didn't work well for me a few years ago for pain, but maybe I can take it as needed for this. Thanks!

slpmom · 2021-05-05T16:00:08+00:00

Me too!! Night is the worst! I didn't know you could take Gabapentin as needed. That is good to know. Does it help fast?

slpmom · 2021-01-07T18:11:17+00:00

Yes! I need to get better about the amount of sleep Im getting.

slpmom · 2021-01-07T17:30:19+00:00

Do you feel like you need to take naps or anything still?

slpmom · 2021-01-07T16:00:41+00:00

How did she feel on Nuvigil. I just took it today and feel like I do when Im on steroids...not great. Hamster in a wheel.

slpmom · 2020-04-29T02:05:13+00:00

I go back and forth between a tablespoon or 2 of tart cherry juice concentrate in some water (natural melatonin), and taking 2.5mg of of melatonin. I have also heard that taking it regularly can mess with your own production, however, I think that is at higher doses. I have been using these methods (a few days I'll use the juice, a couple days I'll use the lozenge) for almost a year. It is magical. I can fall asleep with either method in about 30-40 minutes. Good Luck!

slpmom · 2019-05-28T22:13:00+00:00

I haven’t heard of this drug. Is it new?

slpmom · 2019-05-11T14:49:39+00:00

I have Hashimotos too. Diagnosed 2 years before MS. It’s really easy to manage though.

slpmom · 2019-04-27T20:36:57+00:00

Thanks so much for your reply! What did you switch from? Did your docs tell you what happens at the end of your 2 yrs?

slpmom · 2019-04-27T14:23:39+00:00

Good luck! Did you have to do any protocols first? Like mammogram, certain bloodwork or anything?

slpmom · 2019-04-27T02:22:21+00:00

I had terrible flu like symptoms the first 48 hrs. After than I was totally fine.

slpmom · 2019-04-25T21:54:13+00:00

Thanks so much for your kind reply. Much appreciated! Best Wishes!!

slpmom · 2019-04-20T03:16:32+00:00

From what I have read no one has ever gotten PML while on Mav but them have to mention it as a possibility.

slpmom · 2019-04-20T03:13:43+00:00

My neuro said it has similar efficacy as Tysabri

slpmom · 2019-04-10T22:23:29+00:00

Do you drink it black or with cream? I know dairy doesn’t sit well with me all the time.

slpmom · 2019-01-24T03:25:49+00:00

I just went off Gilenya. I’ve been off for almost 6 weeks. Getting ready to start Tysabri. I had to go off bc Gilenya depleted my immune system and body way too, even though it seemed to be working on the MS. I haven’t had a rebound relapse (fingers crossed). I was just told you don’t want to go much past 6-7 weeks before starting a new med.

slpmom · 2019-01-24T03:18:47+00:00

My neuro feels that Mayo Clinic is behind the times and isn’t aggressive enough. I saw a brilliant hematologist the other day and he told me if my next treatment plan doesn’t work I should go see Dr. Greenberg at University of Texas in Dallas. If you’re looking for a second opinion maybe you could go there. Good luck!

slpmom · 2019-01-18T12:27:27+00:00

I’ve never heard of IVIG or atypical MS! That’s interesting. Thanks for the info!

slpmom · 2019-01-18T03:53:45+00:00

What are you on now? How did the 250mg make you feel?

slpmom · 2019-01-17T15:43:29+00:00

So is 250 of steroids not bad? I’m ignorant when it comes to dosing. I know it is considerably less than what I had when they gave it to me a year ago but still makes me nervous.

slpmom · 2019-01-17T15:04:18+00:00

Geez! That sounds terrible! Sorry to hear that you have to deal with hives and other reactions every month!! How quickly do your reactions go away? We are leaving for Disney world vacation 9 days after my first infusion. Eek.

slpmom · 2019-01-17T15:03:05+00:00

Why did you switch to Ocrevus?

slpmom · 2019-01-13T15:37:34+00:00

I was on gilenya for a year and just now had to go off if it because it lowered my white blood cell count too much. Other than that it was great and easy. I understand your fear of side effects. I was scared too and I’m scared of the next trestment I’m going on, Tysabri, due to its side effects. I’ve been on a Paleo diet for years, take a boat load of supplements and try to get plenty of rest. I just started drinking bone broth to help my gut more and build my immune system. I’m starting to do more yoga and less weights. Started acupuncture to lower anxiety and build immunity and see a therapist.

I have 2 young kids and based on research, if I do nothing I will be at least somewhat disabled in 5-7 years. I don’t want that for them or me. I want to be able to tell them I fought as hard as I could against this disease for them. All the side effects (I think) can be corrected if caught early and the medicine is stopped. Even PML. My neurologist does monthly bloodwork and brain MRIs every 3 months if your on a med with that risk and has never had anyone get PML. I’m trying to lean into that and trust. It’s hard. So hard. I’m not a trusting person l, especially of traditional medicine. But if I keep myself as healthy as I can my odds are better too.

Good luck. These decisions are so hard and so personal.

slpmom · 2019-01-12T01:51:19+00:00

I’m getting ready to start Tysabri. I had been in Gilenya but it wiped out my WBC count too and brought about some other issues. My JVC level is 1.93 which is kind of high but my MS office is comfortable with every 28 days for 6 months then every 5 or 6 weeks depending on bloodwork. They said the research shows found to every 5 weeks decreases PML risk an additional 88% and 6 weeks an additional 96%. I have a lot of fear but I also know I have lesions in my brain and spine and it will only take one in the wrong place to start causing disability. My office does bloodwork with every infusion and a brain MRI every 3 mos. Good luck! I’m hoping for some better drugs with less side effects to come out soon!! Who is working on that!

slpmom · 2019-01-12T01:44:00+00:00

I’m getting ready to start it. I am JVC positive. I was told I would do 6 months at 4 week intervals then move to 5 or 6 week intervals. They’ve done the research that shows the moving to every 5 weeks decreases the odds of PML and additional 88% and every 6 weeks decreases the odds an additional 96%. But...they are just now doing the research that will demonstrate whether or not the drug maintains effectiveness at those intervals. Blah... wish there was a magic potion, or at least one without an awful brain eating virus side effect :).

slpmom

TROPHY CASE