Search found 917 matches

by whyRwehere
Tue Feb 13, 2018 3:57 am
Forum: General Discussion
Topic: Question about PPMS diagnosis and disease course
Replies: 21
Views: 2467

Re: Question about PPMS diagnosis and disease course

Hi, Sorry to hear about your dual diagnosis (ii?). First time I have heard of that. Whatever the outcome, save yourself future trouble by shopping for something that is at least adaptable, if not on the level. I also love charm, but am so glad we have a ground floor apartment...no elevator in our bu...
by whyRwehere
Sat Feb 03, 2018 12:49 am
Forum: General Discussion
Topic: Excessive water intake with MS
Replies: 45
Views: 4661

Re: Excessive water intake with MS

My husband had an infection (UTI) over the summer, and no amount of water would quench his thirst, yet he was dehydrated. A nurse said he needed electrolytes, which did help. Perhaps all your exercising is depleting these too much?
Why
by whyRwehere
Sun Jan 14, 2018 6:34 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI dead - surely an apology needed from Cheerleader
Replies: 40
Views: 4716

Re: CCSVI dead - surely an apology needed from Cheerleader

Thanks Jimmylegs and NHE,
Looks like I have a lot to catch up on. Am definitely going to try and improve the supplements (coQ10 in morning with D And biotine) and the d mag calcium zinc cocktail with the ALA in eve, Jummy).
Now to look at those pedal things,
Why
by whyRwehere
Sat Jan 13, 2018 11:26 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI dead - surely an apology needed from Cheerleader
Replies: 40
Views: 4716

Re: CCSVI dead - surely an apology needed from Cheerleader

Well, hello back at you! Hmmm, money being tight, I have to admit our "regimen" isn't so impressive...of course, we still march forward, so my husband is on the high dose Biotine...Qizenday. Seems to help with strength, fatigue, and circulation, but since he is in a wheelchair for a long time now, w...
by whyRwehere
Sat Jan 13, 2018 1:35 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI dead - surely an apology needed from Cheerleader
Replies: 40
Views: 4716

Re: CCSVI dead - surely an apology needed from Cheerleader

Am trying to be a better human online, like Cece and Jimmylegs :) Joan Oh, is Cece trying to improve her online manners? If so, I might come back on here...was tired of the militantism. On the other hand, I have always appreciated cheer and jimmylegs, and all that they shared. Ccsvi did not work fo...
by whyRwehere
Mon Mar 28, 2016 12:59 pm
Forum: General Discussion
Topic: Red/ ginger hair
Replies: 5
Views: 893

Re: Red/ ginger hair

From what I gather online, which isn't much and I haven't seen any papers, they actually need some light,even if it is low, to produce the vit D...
by whyRwehere
Fri Mar 25, 2016 12:44 am
Forum: General Discussion
Topic: Red/ ginger hair
Replies: 5
Views: 893

Red/ ginger hair

So, I recently read that redheads can produce their own Vit D (without sun). I don't know how that works, but am now wondering how many redheads have MS. So, if you or someone you know has red hair and ms, give a shout here.....
by whyRwehere
Mon Mar 14, 2016 12:23 am
Forum: General Discussion
Topic: Melatonin improves primary progressive MS - Case Study
Replies: 22
Views: 3291

Re: Melatonin improves primary progressive MS - Case Study

Not melatonin, but one of my husband's doctors has been having some patients do sleep studies, and has found that improved sleep has had an effect on "walking" ability for some patients during the day. He offered this study to my husband, as we were discussing the movement/spasms of my husband's leg...
by whyRwehere
Tue Jan 26, 2016 10:13 am
Forum: General Discussion
Topic: Moscow HSCT Treatment - Method of transferring US Dollars?
Replies: 9
Views: 905

Re: Moscow HSCT Treatment - Method of transferring US Dollar

Sarah,
That was a bit harsh on old cure...if you want banking advice go ask a banker! Simples, as the Meerkat says.
Why
by whyRwehere
Tue May 06, 2014 7:38 am
Forum: General Discussion
Topic: Where to live?
Replies: 2
Views: 925

Re: Where to live?

A good question! Even if you don't have MS. But because my husband does, we live in a country with "free" healthcare (we still pay for a private insurance to cover most of what the social security doesn't).
by whyRwehere
Sun Dec 22, 2013 4:58 am
Forum: Ampyra
Topic: Too expensive
Replies: 8
Views: 4335

Re: Too expensive

Did you ever get this compound form done? My husband has been offered the name brand...must be 12 hours apart and watch for signs of epileptic fits ( or is that just epileptics just can't take ampyra?). Week, he hates to take any drug and at the moment does nothing but diet but he has decided to giv...
by whyRwehere
Thu Dec 19, 2013 12:48 am
Forum: General Discussion
Topic: 6 months of BOTOX seems to be wearing off but onlyafter 12pm
Replies: 2
Views: 1070

Re: 6 months of BOTOX seems to be wearing off but onlyafter

I don't have MS, my husband does, but I do have a theory that when we lie down, our processing systems work better. If I go before bed, I will think I am good for the night, but after lying down for half an hour, I need to go again. So I suggest, you go more in the am, because you have been lying do...
by whyRwehere
Thu Dec 19, 2013 12:38 am
Forum: General Discussion
Topic: Using a catheter
Replies: 2
Views: 981

Re: Using a catheter

My husband uses 5-6 a day. He was hesitant at first, but the other option, where a bag is external but attached to the bladder via a tube, was unpleasant to him. He also had Botox, and should have had that done again last month, but he didn't enjoy the experience! He is also very careful, but gets m...
by whyRwehere
Thu Dec 19, 2013 12:28 am
Forum: General Discussion
Topic: Balo's Concentric Sclerosis
Replies: 28
Views: 6180

Re: Balo's Concentric Sclerosis

I agree with Lyndacarol to keep a journal. Also, do not assume the right tests have been done...you need to keep an eye on everything. Once in hospital, my husband was receiving a drip, which wasn't working...I mentioned this to the nurse, and she basically said it was working and assumed I was an i...
by whyRwehere
Thu Aug 15, 2013 2:39 pm
Forum: General Discussion
Topic: MS patients see rapid expansion of effective new treatments
Replies: 6
Views: 1258

Re: MS patients see rapid expansion of effective new treatme

I third what Harry said! Sometimes "MS Specialist" sends up a red flag, in my opinion....could be code for big pharma's best friend....