Search found 84 matches
- Tue Apr 27, 2021 6:08 am
- Forum: Parents with MS
- Topic: Explaining MS to a 3 year old?
- Replies: 12
- Views: 24256
Re: Explaining MS to a 3 year old?
No one's posted on this topic in a few years, and I'm interested if anyone has any follow-up. I have 3 boys - 5, 7, and 9 y/o. I've talked to them about MS only a little bit, and mostly about how it limits me at any given moment. They all know my legs are "wonky", and that sometimes I'm ex...
- Fri Nov 25, 2016 4:28 am
- Forum: Diet
- Topic: HELP me with MS water fasting
- Replies: 8
- Views: 16315
Re: HELP me with MS water fasting
Yes, 21 days is quite extreme and not something that it is safe to just jump into. People who use long-term water fasting generally train their way up to that. "Cure" is also an inappropriate word. It might help, even help a lot, but it's no silver bullet. It's very individual. I do interm...
- Tue Nov 12, 2013 10:26 am
- Forum: Gilenya
- Topic: FDA continues to investigate possible Gilenya link to PML
- Replies: 2
- Views: 3047
Re: FDA continues to investigate possible Gilenya link to PM
Do you know if the patient had ever been on tysabri? I (along with many others) was on tysabri for quite some time before switching to Gilenya.
- Tue Nov 12, 2013 10:23 am
- Forum: Gilenya
- Topic: Upset stomach
- Replies: 1
- Views: 2843
Re: Upset stomach
Hi Katzeg. I don't have a lot to add, other than I know a few (3) people on Gilenya IRL, and I've been on it since January. None of us have noticed any stomach issues that can be traced to Gilenya. Sorry I can't offer more. Just a few anecdotal points. I certainly don't remember reading anything abo...
- Mon Mar 11, 2013 1:23 pm
- Forum: Tysabri (Antegren, Natalizumab)
- Topic: 159 cases of PML with 29 deaths for Tysabri MS patients
- Replies: 29
- Views: 12815
Re: 159 cases of PML with 29 deaths for Tysabri MS patients
Meanwhile, I know someone whose been on it for 17 months, but she's had NO help from it. If I were her, I'd have dropped it ages ago. Being on Tysabri for that length of time would have cost approx $ 65000-$ 70000 and that's a conservative estimate. And you say she is getting no benefit from using ...
- Mon Mar 11, 2013 1:15 pm
- Forum: Natural Approach
- Topic: Vitamin D3 for neuros, but none for patients
- Replies: 1
- Views: 1921
Re: Vitamin D3 for neuros, but none for patients
One doesn't need a prescription for vitamin d. They aren't depriving anyone by not writing prescriptions, and there are neuros out there who actively promote it. It seems odd if the same neuros are saying the would take it, but wouldn't recommend it to patients - I'm guessing that there are just dif...
- Tue Feb 05, 2013 2:15 pm
- Forum: Parents with MS
- Topic: Trying to decide...
- Replies: 7
- Views: 8153
Re: Trying to decide...
I'm a 30 y/o father with MS. I can only say that you AND your partner need to be aware going in what your limitations are, and that they might increase. There are times when I would LOVE to help my wife, and I simply can't. She takes on an extra burden. Both of our lives are better, for having our s...
- Tue Feb 05, 2013 2:11 pm
- Forum: Parents with MS
- Topic: idea for schools
- Replies: 1
- Views: 5626
Re: idea for schools
What part of the world are you in?
- Tue Feb 05, 2013 1:54 pm
- Forum: Gilenya
- Topic: Gilenya and Erectile Disfunction
- Replies: 2
- Views: 4152
Re: Gilenya and Erectile Disfunction
I wasn't supposed to have a waiting period between tysabri & gilenya, but the hospital f***ed up and I went a week past when I would have normally had my next infusion. That was a BAD week for my, symptom-wise - fatigue, drop-foot, neurogenic bladder, parasethia, "hug", etc. Things sta...
- Sat Feb 02, 2013 1:55 pm
- Forum: Gilenya
- Topic: A severe side effect response to gilenya
- Replies: 13
- Views: 13178
Re: A severe side effect response to gilenya
As to the "sudden death"s - When you have thousands or tens-of-thousands of people in a trial , it happens sometimes that things happen to them unrelated to the drug. Hi again, ariehs, I hate to keep pounding on this topic, but I think it's important to give our TiMS readers the most accu...
- Fri Jan 25, 2013 5:51 pm
- Forum: Reading Nook
- Topic: E-BOOKS ROCK!
- Replies: 6
- Views: 6916
Re: E-BOOKS ROCK!
I've been reading ebooks on various handhelds since 1999, and cell-phones since the first big-screen phones (pre-smartphones). Since I got a kindle, though, that's become my primary reading method.
- Fri Jan 25, 2013 5:46 pm
- Forum: General Discussion
- Topic: If your hands are numb, you might want to try this...
- Replies: 12
- Views: 2945
- Fri Jan 25, 2013 5:26 pm
- Forum: Stem Cells
- Topic: Got it done - Dr. Slavin's Protocol
- Replies: 56
- Views: 23454
Re: Got it done - Dr. Slavin's Protocol
Hello! I was away from this website for a long time... I don't really know why. Life just got busy. I started relapsing again 14 months after the treatment with the CTCI, so while that was great (3-4 a year down to nothing for over a year!!!) I had to start looking at new options. In 2011 I had 2 re...
- Fri Jan 25, 2013 5:08 pm
- Forum: Gilenya
- Topic: A severe side effect response to gilenya
- Replies: 13
- Views: 13178
Re: A severe side effect response to gilenya
Besides the sudden death side effect 8O , my medical history hits a couple of the other warnings/precautions (macular edema, HIGH blood pressure), so Gilenya doesn't sound like it's for me. Although my neuro would love for me to take something. Anything. She doesn't care what I choose. Before I beg...
- Fri Jan 25, 2013 4:55 pm
- Forum: Gilenya
- Topic: Gilenya and Erectile Disfunction
- Replies: 2
- Views: 4152
Gilenya and Erectile Disfunction
Since being diagnosed I've had a varying mild-to-moderate case of ED and anorgasmia. I tried cialis and viagra to treat, and while they certainly worked, I always found it difficult to get the timing right - which just added more stress to a stressful symptom. Since starting Gilenya, I've felt like ...