Does anybody else have MS?

[gr8dane]

I just had an interesting (to put it mildly) thing happen. I had an MRI done over the holidays (was about to change treatment) and the report came back that the MRI showed NO ACTIVE LESIONS!!! I didn't even know that could happen. Obviously, I'm calling my neurologist Monday, but in the meantime, I did a little tire kicking on the web, triggered by the Parkinson's discussion, and came across this

Cigarettes boost MS risk, but not through nicotine | Reuters

I realize that my situation is anecdotal, and may be a completely isolated case, but it would be interesting to hear back from anyone else in the MS clubhouse, who has started vaping.

Going to go crack open a bottle of wine to celebrate.

 

[suddenly]

I also have ms. Had it since I was 19, also first time I went blind for 3 months. Lost count of the other times since. I just turned 608-o!! I kinda gave up on MRI's because I am alergic to all the drugs anyway. Dr wants me to do kemo. NO WAY!!
Good to know that I am also helping my MS plus my lungs by giving up smoking. I never heard or read anything about that connection before. Thanks for the good news.

Suddenlyno

 

[crashtestjeep]

WOW! GREAT news Gr8dane! I have another CT scan for my lung nodules coming up w/in the next month-Hope I have some great news like this....Enjoy that wine and drink one for me! AWESOME NEWS!

 

[gr8dane]

Suddenlyno, they've got a new once a month IV that he was going to put me on. I'm assuming with that MRI, that I may be off the hook. I'd really like hearing from folks who are doing the regular monitoring, to see if there are any changes. You're right, it would be GREAT if we were killing 2 birds with one stone with this.

CTJ, thanks...needless to say, I'm a happy camper. I've already put a new bottle of wine on the shelf. When I hear the good news from you, I'll crack it open!

 

[WebNetIncome]

Excellent news there gr8dane! Glad to hear it. CrashTJ, hope good news for you too. I did not see or know about that. I got lucky a while back on some lung nodules as the doc said after further study they were within normal ranges and ok for now, but may want to do scans in future to keep eye on them.

I will definitely join in on any and all celebrations as they occur. Good excuse to pour me a good mixed drink===lol

 

[Katmar]

Suddenlyno, they've got a new once a month IV that he was going to put me on. I'm assuming with that MRI, that I may be off the hook. I'd really like hearing from folks who are doing the regular monitoring, to see if there are any changes. You're right, it would be GREAT if we were killing 2 birds with one stone with this.

CTJ, thanks...needless to say, I'm a happy camper. I've already put a new bottle of wine on the shelf. When I hear the good news from you, I'll crack it open!

Good news about your MRI. Now, for some facts. I have MS also and became very proactive after too much medicine and too little info from the docs. Active lesions usually occur when you are in a relapse and have major symptoms. It is always good when there are no active ones. But it really doesn't change the status of your MS.
ALWAYS be aware of and gain as much knowledge as you can about the medicines. Tysabri is a once a month or even every several months IV drug. It can be pretty effective in decreasing relapses. BUT, it is a very dangerous drug. You run a risk, albeit a small one, of developing a deadly brain infection. The last I heard, you actually had to sign consent forms.
Look into the studies of vitamin D3, which is not really a vitamin, but a steroid hormone. Doesn't have all the nasty side effects of regular steroids. I am currently in a worldwide study group taking high doses of D3 and let me tell you something. To a PERSON, each and every one of us has had significant improvement. This is in the areas of fatigue, spasticity, the woozies, energy and a few others. The clinical studies are finished and conclusive. Read up on it, fellow MSers. I will be glad to answer any questions if I can.

 

[Stephaniems]

Little off topic but I give my autistic son D3 and he's improved greatly in communication and sentence structure. I think D3 is awesome.

 

[Katmar]

Little off topic but I give my autistic son D3 and he's improved greatly in communication and sentence structure. I think D3 is awesome.

That's wonderful!! They are using it also for ADHS, Parkinsons, some cancers and as an actual preventative in children who may be predisposed to MS. So many things...

 

[gr8dane]

Good news about your MRI. Now, for some facts. I have MS also and became very proactive after too much medicine and too little info from the docs. Active lesions usually occur when you are in a relapse and have major symptoms. It is always good when there are no active ones. But it really doesn't change the status of your MS.

I discovered that today when I called the clinic about the report (wishful thinking on my part).

ALWAYS be aware of and gain as much knowledge as you can about the medicines. Tysabri is a once a month or even every several months IV drug. It can be pretty effective in decreasing relapses. BUT, it is a very dangerous drug. You run a risk, albeit a small one, of developing a deadly brain infection. The last I heard, you actually had to sign consent forms.

You are correct in all of the above. The risk for brain infection occurs after being on it for an extended period of time (over a year). The plan is for me to go on it short term. Also, it's interesting that the huge majority of these cases have not been in the US, all tho the huge majority of the users of this treatment are in the US. So it appears that there are possibly other factors involved (environmental?).

Look into the studies of vitamin D3, which is not really a vitamin, but a steroid hormone. Doesn't have all the nasty side effects of regular steroids. I am currently in a worldwide study group taking high doses of D3 and let me tell you something. To a PERSON, each and every one of us has had significant improvement. This is in the areas of fatigue, spasticity, the woozies, energy and a few others. The clinical studies are finished and conclusive. Read up on it, fellow MSers. I will be glad to answer any questions if I can.

Thanks, and I will not only look into it, but bring it up with my doc. I'm very fortunate, because I'm not dealing with a general neurologist. He is an MS specialist (his mother had it), with that being the focus of his clinic. He's not only very knowledgeable (and often does seminars on) the latest protocols, he's very open to 'what about' discussions. Let me guess, is D3 an oral? The reason I'm going on this short term, is that there is a very effective oral that is supposed to be released soon...maybe early/mid summer? Since I have a 'mild' case (not based my report, that story's for another post) I may consider holding off til then. I'll run it by the dude.

I'm sure most of you have seen the 'smoking makes MS worse' studies(bunches of them). Our MS docs know this. This forum is GREAT...it would be wonderful to give our guys some anecdotal evidence to tell their smoking clients to give e-cigs a spin around the dancefloor.

 

[Katmar]

Actually, a few people died from the infection very soon after going on tysabri. My doc wanted me to take it, so I started reading up on it. No way!!
If you have a milder form of MS, why take a chance? Short term use of the therapy poses dangers, too. And, in fact, you could develop this infection further down the road, after you stop taking it.

D3 is oral and IS available in stores. It comes in 1000iu, 2000iu and 5000iu most places. Request a 25(OH)Hydroxy test, as this is the true test for D3 levels. You can certainly start taking it before you get tested as patients with MS are always low.

Make sure you buy D3 not 2!!!!

 

[suddenly]

Dear Katmar,
I have had MS since I was 17. I am now 60. I found out what it was in my late 40s after a spinal cord lesion. WOW was that bad.8-o I am allergic to all the current treatments for MS, so I take nothing. I have tried LDN but it doesn't seem to do much anymore. I am now in the secondary primary stage of MS. It is way past relapses and remissions for me. The symtoms are pretty much constant. I do still have severe flareups still. Like going blind. Lost count on how many times that happened. First time was when I was 17. My doctor told me it was female problems. Yea right.NOT!!!
After the spinal cord lesion things went down hill fast. Doc told me I would have maybe 3yrs more to be able to walk. That was about 15yrs ago and still walking, but painful. Sorry about the long history but I wanted you to know some info before I asked this question. Do you think the D3 would help someone this far along with MS? Also what dose should you start at?
Thank you for the info. I had stopped searching for information a few years ago because I was told there was nothing for me because of the progression and alergic reactions, so just working on coping skills and working on the depression. Symtom not depressed over MS. Does D3 help with this also? Love to hear back from you
thank you

 

[Kilroy]

Yeah, my wife has MS, Primary Progressive. She read up on this and told the neurologist no way. She is, or was, before she went on disability, a nurse. She has participated in some research, but passed on this,

 

[Katmar]

Dear Katmar,
I have had MS since I was 17. I am now 60. I found out what it was in my late 40s after a spinal cord lesion. WOW was that bad.8-o I am allergic to all the current treatments for MS, so I take nothing. I have tried LDN but it doesn't seem to do much anymore. I am now in the secondary primary stage of MS. It is way past relapses and remissions for me. The symtoms are pretty much constant. I do still have severe flareups still. Like going blind. Lost count on how many times that happened. First time was when I was 17. My doctor told me it was female problems. Yea right.NOT!!!
After the spinal cord lesion things went down hill fast. Doc told me I would have maybe 3yrs more to be able to walk. That was about 15yrs ago and still walking, but painful. Sorry about the long history but I wanted you to know some info before I asked this question. Do you think the D3 would help someone this far along with MS? Also what dose should you start at?
Thank you for the info. I had stopped searching for information a few years ago because I was told there was nothing for me because of the progression and alergic reactions, so just working on coping skills and working on the depression. Symtom not depressed over MS. Does D3 help with this also? Love to hear back from you
thank you

Yeah, my wife has MS, Primary Progressive. She read up on this and told the neurologist no way. She is, or was, before she went on disability, a nurse. She has participated in some research, but passed on this,

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There is a ton of info on this site. There are ways other than MS meds to help with your symptoms. There is a lot to sift through, but it is well worth it. If I can be of any help, PM me or ask on this thread, PLEASE. There is a lot of research on D3 and a few other things.