MS Discussion

my mother has had ms for 18+ years and is in real bad shape i have told told my father ans sisters about this treatment and i`m tring to get them to make a move
thank you for posting this info
 

mr west

Well-Known Member
thats the worst thing bout new treatments. It prob wont be avalable to joe public on the street for years, thats if it gets accepted as a worthwhile treatment. Like i say im still waiting for the goat serum from medical grade goats.
 
Excellent, excellent information. It literally brought tears to my eyes. My father died of another form of ataxia- machado joseph's disease. My mother has ataxia as well....Multiple Sclerosis. It is good to see that they are making some progress. This is really inspirational and truly motivational.

My mom had recently moved in with me due to her misfortune and we have decided to try and grow a few plants. I have told her of the benefits and researched it and let her read for herself. As with any persuasion, it is always better with a visual, ie video. Right when she was about to give in (I saw it with dad) something like this gives new light.

Anyway, thanks for the link. I had not been real active the last couple weeks adn had not seen this. Thank you.
Sincerely,
Smallchange:clap::clap:
 
Excellent, excellent information. It literally brought tears to my eyes. My father died of another form of ataxia- machado joseph's disease. My mother has ataxia as well....Multiple Sclerosis. It is good to see that they are making some progress. This is really inspirational and truly motivational.

My mom had recently moved in with me due to her misfortune and we have decided to try and grow a few plants. I have told her of the benefits and researched it and let her read for herself. As with any persuasion, it is always better with a visual, ie video. Right when she was about to give in (I saw it with dad) something like this gives new light.

Anyway, thanks for the link. I had not been real active the last couple weeks adn had not seen this. Thank you.
Sincerely,
Smallchange:clap::clap:
 

growwwww

Well-Known Member
thats the worst thing bout new treatments. It prob wont be avalable to joe public on the street for years, thats if it gets accepted as a worthwhile treatment. Like i say im still waiting for the goat serum from medical grade goats.
Its not really a bad thing, it has to be published and gone through respected medical journals first and trials have to be done...Its a long process but bloody necessary...

The truth is, we see these articles and whatever, and ( i dont think this will follow the line ) but like with stem cell research, in laxed, asian countries people are claiming to have a cure to paralysis etc...using stem cells and whatever....Yet western medical research has shown that its pretty much useless and that its not as simple as what these doctors are pulling it off to be...( making a fuck load of money aswell ) good cures to come around....
 

tnrtinr

Well-Known Member
my mom has ms and she smokes weed sometimes, medicinally of course. she says she dosnt like it but it def helps her, i think she dosnt like it cuz she smokes garbage midgrades. i told her if shed let me get her some good weed then she might actually like it, but she says the prices arent worth it. i dont think shes ever smoked good weed
Get busy..... My mom wouldn't be waiting.
 

Babs34

Well-Known Member
Basicly we need a fat free diet cuz our boody cant deal with fat cells like other ppl
LOL, you should have seen my face when you said we're not supposed to eat chocolate. :shock:

It's funny how you could read for an eternity on the do's and don'ts.....
I was given a long list of herbs and foods to avoid. I don't remember most of it, just goes to show I'm likely not avoiding it.

That's the first I've heard about a fat-free diet. Odd thing is that I eat tons of junk food...I'm ashamed, but honestly, I have very low body fat.

Or does it have nothing to do with body fat?
 

Babs34

Well-Known Member
Yeah real lucky lol. Are u on any treatments for ms? Im on beta interfearon once a week intermuscular injection. I hate that neeedle i dunno if i could spike myself every day too. :bigjoint::bigjoint::bigjoint: spliff time lol
My doctor gave me the choice. After reading upon the 3, it was just too obvious to go with the Copaxone. For me, it was a no-brainer. I was told Rebif and Betaseron would likely make me suicidal. Yet, my doctor did suggest the Rebif/Betaseron.

I've got to be honest. I have little faith in the injections. Copaxone states that you "may" have an 8% less chance of progression by injecting.

I've stopped it altogether recently. Every single injection feels like being stung by a bee, but that's not the worst part. It itches and swells and then once you rotate "sites"....you irritate the shit out of it all over again.

In fact, I only used it for a few months. Using this medicine leaves pits in your skin at the injection site because it destroys the underlying fatty tissue. I'm already naturally thin, so, last thing I needed. It also leaves seemingly permanent bruises as well. It would occasionally cause aches in the joints of my hands, making me feel like I had some extreme arthritis on top of MS.

I almost feel obligated to start taking it again. I have almost 12 grand sitting in my refrigerator. Sigh.....I hate to be wasteful, but I hate those damn syringes!

For your sake, I hope you don't have the typical effect of flu-like symptoms.

As my doctor was pushing that one on me, she was telling me that most people opted to inject on the week-end (after the work week)....what a way to spend your week-end I thought...sigh.
 

mr west

Well-Known Member
My doctor gave me the choice. After reading upon the 3, it was just too obvious to go with the Copaxone. For me, it was a no-brainer. I was told Rebif and Betaseron would likely make me suicidal. Yet, my doctor did suggest the Rebif/Betaseron.

I've got to be honest. I have little faith in the injections. Copaxone states that you "may" have an 8% less chance of progression by injecting.

I've stopped it altogether recently. Every single injection feels like being stung by a bee, but that's not the worst part. It itches and swells and then once you rotate "sites"....you irritate the shit out of it all over again.

In fact, I only used it for a few months. Using this medicine leaves pits in your skin at the injection site because it destroys the underlying fatty tissue. I'm already naturally thin, so, last thing I needed. It also leaves seemingly permanent bruises as well. It would occasionally cause aches in the joints of my hands, making me feel like I had some extreme arthritis on top of MS.

I almost feel obligated to start taking it again. I have almost 12 grand sitting in my refrigerator. Sigh.....I hate to be wasteful, but I hate those damn syringes!

For your sake, I hope you don't have the typical effect of flu-like symptoms.

As my doctor was pushing that one on me, she was telling me that most people opted to inject on the week-end (after the work week)....what a way to spend your week-end I thought...sigh.

crazy stuff lol. I stopped taking interfearon for about a year bout 24 months ago and have been back on them for bout a year. I know what ya mean bout the injections and the sites afterwards. I didnt see any difrance with being off it for a year but paranoia and the cost of it made me go back on it lol. I gotta nerologists appointment on the 17th, I shall ask him about Dr. Paolo Zamboni, see what he tells me lol.
 

Babs34

Well-Known Member
crazy stuff lol. I stopped taking interfearon for about a year bout 24 months ago and have been back on them for bout a year. I know what ya mean bout the injections and the sites afterwards. I didnt see any difrance with being off it for a year but paranoia and the cost of it made me go back on it lol. I gotta nerologists appointment on the 17th, I shall ask him about Dr. Paolo Zamboni, see what he tells me lol.
I'm with you. Neurologists are limited in my area. I will be seeing a new neurologist soon---took 5 months just to get an appt. with a referral.

This new doctor is supposed to be really on top of MS, so I too will be mentioning this surgery. WTH? As much as I hate surgery, I'll opt for this one. I've had 2 already in the past few years.

I truly believe Dr. Zamboni is on to something significant.
 

ChemisTree

Active Member
Hole-lee-shit. I'll send this to my brother-in-law who was recently diagnosed. That's pretty damning evidence right there.
 

MacGuyver4.2.0

Well-Known Member
Thought I'd give some updates as to what I've found so far regarding this story. Did some Google research and it turns out that a Vascular Surgery Clinic in Buffalo NY is ALREADY doing a clinical trial of the procedures and testing on 1700 MS patients!!! Very good news! :) Here's link-
http://www.buffalo.edu/news/10562

RIU if you could paste this link into a sticky so it doesn't get buried, we ALL would greatly appreciate it!!! :)
 

bobtokes

Well-Known Member
has anyone taken any of this info to there neurologist, if so what did they say ? did they know about it.
 

MacGuyver4.2.0

Well-Known Member
has anyone taken any of this info to there neurologist, if so what did they say ? did they know about it.

...and we are going to tell the doc NO MORE MRI's until we get this new approach looked into fully! I'll post back here what the doc says, but I'm not going to get too excited yet.
 

Babs34

Well-Known Member
has anyone taken any of this info to there neurologist, if so what did they say ? did they know about it.

I want to say my appointment is in March, maybe April? I will be expecting my newfound doctor to be well informed accordingly.

McGuyver, don't be so willing to put full faith in your neurologists knowledge. They deal with so many neurological assesments, they are so often clueless....take my word.

It took my own personal research to enlighten both my regular physician and neurologist. I had, not too long ago, been prescribed an antibiotic that gave me a series of nightmares...and this was only after a three day course. I just KNEW something was so completely OFF. It turned out I was right. Countless accross this country had the very same problems as I did. It had much to do with those with comprismised immune systems not safely partaking. It has taken clinical studies to figure this out, but I learned of it long ago.
When I had approached my past neurologist with this fact, she merely shunned it as highly unlikely.
Doctors are extremely imperfect in many aspects amongst their field.....particularly regarding medicine/treatments.
Accept they just don't keep up with everything pertaining to MS.
The MRI's are nothing short of a joke. It would appear getting one will be HARDER than it was in the past, but the way i look at it.......I'm in no rush to find out I have even more lesions running their course in my brain. I can sure as hell hold out on that information for another year or two.

I'll get back with my findings.....til then--:joint:
 

mr west

Well-Known Member
has anyone taken any of this info to there neurologist, if so what did they say ? did they know about it.
im doiing this today, I shall as my nerologist and if he hasnt seen or heard of it ill give him a printed article of it.
 
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