Search found 1147 matches

by Anonymoose
Sun Jun 09, 2019 6:15 pm
Forum: Daily Life
Topic: Some of the reasons
Replies: 18
Views: 452

Re: Some of the reasons

Hey Moose i didn't even think the ankle problem was part of ms but they just keep coming. I have had a sore jaw for months and the ach moved up the side of my head, for a time I thought it was a wisdom tooth but just for fun I googled jaw pain/ms and there it was, I laughed😊 some wouldn't no matter...
by Anonymoose
Sun Jun 09, 2019 5:30 am
Forum: Daily Life
Topic: Some of the reasons
Replies: 18
Views: 452

Re: Some of the reasons

But it's not up to me Elliot theres a point that ms tips the scale in its favor and it's not up to you. I tried suggestions from tims, interferon , eat right , tested for CCSVI exercised regularly, had a pic line put in for 8 months of intravenous antibiotics. At times I really thought I was on to ...
by Anonymoose
Fri Jun 07, 2019 5:59 am
Forum: Daily Life
Topic: Living without a life,
Replies: 18
Views: 455

Re: Living without a life,

Hey Robbie, I hope you’re in touch w people in a similar situation behind the scenes. There is clearly a need for some sort of easily found online interface designed specifically for the purpose of peer support at every stage of disease. I know what you’re talking about. I have my exit plan arranged...
by Anonymoose
Wed Jun 05, 2019 5:03 am
Forum: Daily Life
Topic: Living without a life,
Replies: 18
Views: 455

Re: Living without a life,

Hi Moose I made a ceiling hoist from stuff a lot cheaper,couldnt afford the real thing. That was partly why the PSW didn't work out, no faith in my engineering skills. Makes it possible for my wife to move me around though. Disability is a rich person's game. Wow! I looked @ the link NHE posted. Ho...
by Anonymoose
Mon Jun 03, 2019 6:57 pm
Forum: Daily Life
Topic: Living without a life,
Replies: 18
Views: 455

Re: Living without a life,

No problem Moose , got a hoist now Had PSW for 2 yrs didn't work out.just that last step Would something like a surehands system work or is that like the hoist you already have? https://www.surehands.com/ The stairway analogy isn’t corny at all. Sometimes I feel like a salmon...fighting the current...
by Anonymoose
Mon Jun 03, 2019 1:04 pm
Forum: Daily Life
Topic: Living without a life,
Replies: 18
Views: 455

Re: Living without a life,

The last nail in the coffin for me was loosing the ability to transfer myself into the chair, that was a deal breaker. Forgive my ignorance. I’m sure I’ll put my foot in it... Have you researched transfer assist devices? Maybe you could get that independence back?? If $$$ is an issue, those online ...
by Anonymoose
Sun Jun 02, 2019 8:41 am
Forum: Daily Life
Topic: Living without a life,
Replies: 18
Views: 455

Re: Living without a life,

Hey Robbie, I love being alone so I’ll prolly be a bit annoying here but I thought I’d share a few ideas for using up time while stuck in bed/chair. When I’m sick/exhausted, I crochet. (Guys do knit/crochet too so don’t get all huffy on me.) My son loves the blankets I make him just like I loved the...
by Anonymoose
Tue Oct 23, 2018 7:01 pm
Forum: Mavenclad (Cladribine)
Topic: cladribine / leustatin / mavenclad
Replies: 25
Views: 2129

Re: cladribine / leustatin / mavenclad

@jimmy

Fair enough and yeah, I feel that. Good thing we’ve got ourselves. ;)

Be well
by Anonymoose
Tue Oct 23, 2018 1:49 pm
Forum: Mavenclad (Cladribine)
Topic: cladribine / leustatin / mavenclad
Replies: 25
Views: 2129

Re: cladribine / leustatin / mavenclad

@Scott1 I guess my original intent was to reduce ebv load and I probably did that. But...ebv can hang out in non-b-cells so I doubt I totally killed it off. Part of the reason I did the beuhner protocol and worked w an out-there integrated medicine doctor was to maximize my immune system’s potentia...
by Anonymoose
Mon Oct 22, 2018 6:11 am
Forum: Mavenclad (Cladribine)
Topic: cladribine / leustatin / mavenclad
Replies: 25
Views: 2129

Re: cladribine / leustatin / mavenclad

Hi Scott, I can’t do the valtrex this time. It makes me too sick and I need my wits about me atm. On the bright side, no valtrex means I can take 2000iu d3/day which should help the Rituxan do its work and seems to be needed as it was the only thing that cleared the long lingering cloud out of my he...
by Anonymoose
Sun Oct 21, 2018 2:04 pm
Forum: Mavenclad (Cladribine)
Topic: cladribine / leustatin / mavenclad
Replies: 25
Views: 2129

Re: cladribine / leustatin / mavenclad

Cladribine would be significantly riskier than heavy duty iv/it Rituxan every 4-5 years. It’s impact on the immune system is stronger and lasts significantly longer. That said, I’m not sure my rituxan regimen is working...mri was okay but my increase in OCBs not pleasing in the least. Cladribine tre...
by Anonymoose
Fri Oct 19, 2018 6:12 pm
Forum: Mavenclad (Cladribine)
Topic: cladribine / leustatin / mavenclad
Replies: 25
Views: 2129

Re: cladribine / leustatin / mavenclad

Hey jimmy, I was considering going with Cladribine but wimped out and stuck with Rituxan. It’s still next on my list for now. I suppose it goes w/o saying that I would be psyched to read of someone else trying it before I try it. You go first and I’ll follow in a few years? :D Good luck w your resea...
by Anonymoose
Fri Oct 19, 2018 5:59 pm
Forum: General Discussion
Topic: erectile disfunction
Replies: 4
Views: 717

Re: erectile disfunction

Hi Maxim, While I, being female, am ill-equipped to relate to your exact circumstance, I can relate to unexpected short-lived improvements. For me, they are always always always caused by something I ate. When you experience those 2-3 extraordinary days, take note of what you’ve been eating. If ther...
by Anonymoose
Wed Sep 26, 2018 4:09 pm
Forum: Rituxan (Rituximab)
Topic: Rituximab iv and intrathecal with valtrex
Replies: 130
Views: 26153

Re: Rituximab iv and intrathecal with valtrex

CSF results are in...high IgG, normal albumin, high IgG/albumin ratio, >12 ocbs unique to CSF (last test was 9 and I think the lab dudes should be able to count higher than 12), and high mbp according to a yet to be proven test (the normal range for it allows for 1.2ng/ml mbp. It’s normal to have mb...
by Anonymoose
Thu Sep 13, 2018 6:01 pm
Forum: Rituxan (Rituximab)
Topic: Rituximab iv and intrathecal with valtrex
Replies: 130
Views: 26153

Re: Rituximab iv and intrathecal with valtrex

Updating this for those still or newly interested in Rituxan... I had first post Rituxan MRI (no gadolinium) in August. I’ve still not seen the film but read the MRI report yesterday during my first infusion of rituxan round II. The radiology report said “very mildly progressing disease over interva...