Search found 28 matches

by luckyme
Thu Nov 03, 2016 6:46 am
Forum: Introductions
Topic: Been diagnosed with demyelating disease, unspecified..still
Replies: 11
Views: 2672

Re: Been diagnosed with demyelating disease, unspecified..st

I am a 41 yr old male. I currently have 7 lesions on my brain, 1 on my c-2 spine and one on t-10 spine. I am also jcv positive which could put me at risk to develop PML with the use of certain dmd drugs. I am currently taking nothing except vit d and b complex cause my bloodwork showed very low numb...
by luckyme
Wed Nov 02, 2016 9:02 pm
Forum: Introductions
Topic: Been diagnosed with demyelating disease, unspecified..still
Replies: 11
Views: 2672

Re: Been diagnosed with demyelating disease, unspecified..st

I'm not very computer saavy or I would send a link but others on this site are and I'm sure would send you some links on it. Good luck to you!!
by luckyme
Wed Nov 02, 2016 8:57 pm
Forum: Introductions
Topic: Been diagnosed with demyelating disease, unspecified..still
Replies: 11
Views: 2672

Re: Been diagnosed with demyelating disease, unspecified..st

Also wanted to add, you mentioned you have a lumbar puncture scheduled? That was my last resort if all the other test were still inconclusive. MRI's have really been the go to nowadays. Lp is not a pleasant thing!!! You really should get the bloodwork also. Especially the lyme test cause lymes disea...
by luckyme
Wed Nov 02, 2016 8:31 pm
Forum: Introductions
Topic: Been diagnosed with demyelating disease, unspecified..still
Replies: 11
Views: 2672

Re: Been diagnosed with demyelating disease, unspecified..st

One thing with ms and I'm sure many will agree, symptoms vary so much between cases that the unexpected is more normal than a specific symptom happening a specific way. However!!! Don't jump the gun on this! IMO you need much more testing done. Thoracic MRI and blood work is a must. Also have your M...
by luckyme
Tue Nov 01, 2016 3:02 pm
Forum: Introductions
Topic: Been diagnosed with demyelating disease, unspecified..still
Replies: 11
Views: 2672

Re: Been diagnosed with demyelating disease, unspecified..st

Welcome to the site. Iv had some similar issues as yours. Mostly with both of my legs. It's pretty annoying! I have been dx with rrms. I have 7 lesions on the brain, one on c-2 spine and one at t-10 spine. Three of which were active. One being the one on t-10. I say this because usually symptoms wit...
by luckyme
Thu Oct 27, 2016 4:27 am
Forum: Introductions
Topic: So... It's official. Time to move forward
Replies: 4
Views: 2170

So... It's official. Time to move forward

Went to see the neuro doc yesterday. So it's official. They want to treat me with trecfidera. They wanted to immediately order Iv steroids for 3 to 5 days but I refused. I believe I'm on the rebound from my flare up. My symptoms are a lot better than what they were so I'm just gonna wait it out. So ...
by luckyme
Wed Oct 26, 2016 6:05 am
Forum: General Discussion
Topic: How often is it allowed to use solumedrol to treat relapses?
Replies: 7
Views: 1880

Re: How often is it allowed to use solumedrol to treat relap

Thank you for that info!! You just helped me make an informed decision. I am seeing the neuro today so we shall see what she says. With your info, it's def gonna be vit d, vit d, vit d and then some more vit d till I get it under control. Ps my dose is 50,000 iu once per week for 8 weeks so I won't ...
by luckyme
Mon Oct 24, 2016 5:49 pm
Forum: General Discussion
Topic: How often is it allowed to use solumedrol to treat relapses?
Replies: 7
Views: 1880

Re: How often is it allowed to use solumedrol to treat relap

Good stuff! I'm goin through this right now. I'm not too sure I wanna take the Iv steroids for my flare up. After all, it's been almost 3 months of feeling this way I kinda think it's gonna go away soon. My symptoms aren't too bad and have been getting better but some days they are worse than others...
by luckyme
Mon Oct 24, 2016 12:42 pm
Forum: General Discussion
Topic: What's my drug of choice?
Replies: 13
Views: 1949

Re: What's my drug of choice?

No I haven't heard of them but since my insurance didn't mention them as being on there list I'm pretty sure a can't afford them.
by luckyme
Thu Oct 20, 2016 4:47 am
Forum: Introductions
Topic: So here's my story. This just sucks!
Replies: 18
Views: 4800

Re: So here's my story. This just sucks!

Believe me I'm not in a rush to get a diagnosis of ms. But I'm also not gonna waste too much time thinkin I don't have it. She already told me she's fairly sure I do have it. Lesions on the brain and spine are pretty convincing evidence. I know there are a lot of other things that may cause similar ...
by luckyme
Wed Oct 19, 2016 11:48 am
Forum: Introductions
Topic: Anyone have any results on the crispy creme diet?
Replies: 0
Views: 1614

Anyone have any results on the crispy creme diet?

Just kiddin but wouldn't that be great!! Or like a dmd that grows your hair back as a side effect. Or makes you stronger. Or gets rid of wrinkles or something. Why do side effects always gotta be bad?! There would be a lot of happy ms'ers out there! Can you imagine? " hey Harry. How's your ms.&...
by luckyme
Wed Oct 19, 2016 11:34 am
Forum: Introductions
Topic: Anyone have any results on the crispy creme diet?
Replies: 1
Views: 2695

Anyone have any results on the crispy creme diet?

Just kiddin but wouldn't that be great!! Or like a dmd that grows your hair back as a side effect. Or makes you stronger. Or gets rid of wrinkles or something. Why do side effects always gotta be bad?! There would be a lot of happy ms'ers out there! Can you imagine? " hey Harry. How's your ms.&...
by luckyme
Wed Oct 19, 2016 11:07 am
Forum: Introductions
Topic: So here's my story. This just sucks!
Replies: 18
Views: 4800

Re: So here's my story. This just sucks!

Isn't that illegal?
by luckyme
Wed Oct 19, 2016 3:10 am
Forum: General Discussion
Topic: Drugs or no drugs? It's more difficult than I thought.
Replies: 9
Views: 1712

Re: Drugs or no drugs? It's more difficult than I thought.

luckyme: I think you are putting too much pressure on yourself and overthinking the decision. Why don't you just ask your doctor what s/he would recommend? If a particular drug is recommended, do some research on the data regarding the efficacy of the drug and the side effects. Nah. I just like to ...

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