[hum-dinger]

I am 28 years old and was diagnosed with MS. I just don't know anyone else with the condition that I could talk to. Thanks for your help.

Look up the former-member Herbivoracious' posts as well as Not A User's.
Though no-longer a participating member, Herbi/NAU made many interesting posts regarding MS and the MS Patients Union.

[hum-dinger]

Will do, thanks Jackie!

Nice to meet you. Althought I don't have MS 2 friends of mine have MS. I took care of them for 10 years and have been friends with them for 14 years now. I will keep you in my thoughts.

[Solidly-here]

Like Edi77, I have a couple of MS friends. One has had it for 12 years.

The thing to remember is: If you can keep your Stress-level down, it may be 5 years (or even 10 years) between "attacks"; so, a little Stress relief is worth Millions. Pot is one of those things which can keep-away the Stress, and bring-in the Fun.

My 12-year friend began Meditation 4 years ago (at my suggestion).
Since then, he has stopped having attacks.
I hope that 4 years from now, he can say: "It's been 8 years."

He has also been to a Support Group for MS patients, and made friends with 3 others there.
They call each other up, and help give Hope.
He hasn't gone to any more meetings the last 2 years, but these friendships last.

[hum-dinger]

Thank you edi77 and Solidly for your words of support.

[SaDayati]

I'm 26 years old and I'm being tested for Lupus & MS right now. I've got nearly every symptom of lupus, plus peripheral neuropathy, seizures, and random shooting nerve pains. Basically, they think I have either Central Nervous System Lupus, or a Lupus-MS overlap syndrome.
I don't really have a whole lot of experience or advice just yet, but I'm in the same boat, and I'd like to have someone to talk to about all this craziness too...
You do have my empathy...

(okay, I'm sort of overusing the smilies, but I'm new to this site, and thy're still a cool novelty...)

[tommyz1052]

You can find alot of helpful information if you google Sativex. Which is a drug based on cannabis ( oral spray) that had and is being tested in Canada and England for MS patients to relieve alot of there symptoms.

I have seen a great many MS patients that find Cannabis helps there specific symptoms. I would exhaust the options with your Neurologist first before trying something new.

[nojoken2]

Hello, I have a personal relationship with the lovely MSSSSSSS! So do many other's, I know. So, Cannabis no matter what, will never harm you! Education, is the key, with that you will gain knowledge, just as you must do in regards to your illness. Always talk to your Neurologist, be strong, cry, just do it...

Your body is betraying you, you don't even understand what is going on, so even the ones who love you will think they "get it", but they won't.(for now) Everybody has an opinion, a thought... (But you don't look sick!) at that moment...

Once you have a diagnosis you are on your way. Medical advancement is awesome today. It's all in what therapy you and your doctor choose to follow. What is right for YOU! If this therapy doesn't work then try another one, and don't be afraid to say HEY, this one is not working for me! Cannibas can be used in addition to any traditional therapy & medications your Doctor perscribes for you. This is a private issue between you and your Doctor! You never have to disclose your medical condition to ANYONE!

It's very overwhelming, be careful, breath and laugh!!! Don't forget to breath!!! Life doesn't stop, people do care...

Education, equals knowledge, giving us strength to spread the truth about cannibas, which leaves us with HOPE to continue pass it on down the line...

Serenity...
J

[hum-dinger]

Originally Posted by SaDayati

I'm 26 years old and I'm being tested for Lupus & MS right now. I've got nearly every symptom of lupus, plus peripheral neuropathy, seizures, and random shooting nerve pains. Basically, they think I have either Central Nervous System Lupus, or a Lupus-MS overlap syndrome.
I don't really have a whole lot of experience or advice just yet, but I'm in the same boat, and I'd like to have someone to talk to about all this craziness too...
You do have my empathy...

(okay, I'm sort of overusing the smilies, but I'm new to this site, and thy're still a cool novelty...)

SaDayati, Please feel free to P.M. me anytime. Having someone of a similar age and situation to talk to would be great. thanks so much to all the Weedtracker family for creating such a huge support group.

[Lady D]

Hey, Hum-dinger & SaDayati!

Just read your posts - and it's a terrible, life-altering event to be diagnosed with an autoimmune disorder of any kind. Being newly diagnosed is quite scary.

I myself have systemic lupus (diagnosed in 2001), and have been to hell and back with it. But MJ helped me kick it into complete remission (almost unheard of with this disease). In May, my antibody panel will have been completely clean of any responses for a solid year! I know the herb was a big part of my health turning around. I don't smoke it, BTW (for obvious reasons), but am quite the expert at edibles.

If either or both of you would like to chat about your situations with someone in the same boat, I'd be more than happy to share what's worked for me. Remember - we have overactive immune systems, and MJ is a very powerful, non-toxic immunosuppressive. It works wonders for patients in our type of predicaments.

I know how isolated you must feel right now, but know that there's hope!

Take care ~~ Lady D

P.S. Feel free to PM, too, if you like.

[SaDayati]

Hi Lady D!
Thank you for your support. Reading your post brought a smile to my face. It's really nice to hear from someone who is having such success in the face of disease. I would love to hear more about your approach to treatment - you're obviously doing something very right...
Hugs!
SaDayati

[lalaland4u]

Lady D,

I too have an AI disorder. I don't really know what to label it as a slew of doctors have resulted in a slew of "diagnosis". Part of the AI problem for me is coughing and chronic bronchial inflammation. Can you please discuss your experience with edibles here? I would love to chat more with you about this. I cannot PM you b/c of the silly 25 post minimum rule.

Any help or advice your could give would be greatly appreciated. I am new to WT and new to MMJ. I had stopped smoking what little I did b/c of lung issues. I've been crawling the edibles board hoping someone would have a similar experience.

thanks,

LaLa

[Lady D]

Hi, lala...AND SaDayati -

Crap - since I'm new, I didn't realize the 25 post requirement either. Give me a couple of days to get through Easter, and I'll start posting away. lol There's a lot of non-MJ related advice, which will really make a lot of sense when you think of it as applied to an out-of-control immune system. As for the ingestion of MJ...as long as you're not smoking it, it should help in both the quelling of inflammation, and in calming down your immune system responses. What kind of possible diagnoses are you getting? Is sarcoidosis one of them? I had that presented to me as a possibility 3 yrs. ago after a throat biopsy, but it turned out not to be the case.

SaDayati - any more definitive news from your docs? They're always afraid they might be wrong, so they may drag this out a bit until you start getting some answers. By all means, insist that they start coming up with them. It's YOUR life, and you're paying these so-called experts for their expertise. In case you hadn't picked up on it, physicians infuriate me. LOL Everybody have a great holiday weekend, and I'll check back with you on Monday. Hang in there ~~ Lady D

[Lady D]

P.S. I'll take a look at the cooking/edibles board and see if there's anything I can say I've tried myself with any success. Other than that, I'll probably post some ideas of my own. Later!

[Lady D]

OK - this is for all you autoimmune disease sufferers (ALL of you, including MS, lupus, rheumatoid arthritis, scleroderma, Crohn's/ulcerative colitis, etc., etc.).

I promised I would give you some of my basic tips for getting your overactive immune systems to calm down. It's no small feat, and it took me 5 years of research, and a couple of years of applied lifestyle changes to send my particular case of lupus into complete remission. By "complete", I mean my antibody panel is totally clean, vs. a simple remission between flares. It's been a year now, and everything is still looking up.

Some of these will seem like no-brainers, but there are many things you do or ingest that really piss off your immune system. There are other things that you should be doing that either haven't crossed your mind, or you're about to hear from someone who's risked life and limb by abandoning her pharmaceuticals for a completely natural approach to treatment. That being said, I am not suggesting that any of you stop taking your meds and stop listening to your doctors...I merely got sick and tired of listening to mine drone on and on about the increasingly toxic meds she wanted me to try, since the big guns she was already giving me weren't working (but they WERE making me sick as a dog). I drew the line before stepping up to methotrexate or Cytoxan, and told my doctor "no", much to her astonishment.

1. If you're not on a macrobiotic diet (basically vegetarian w/fish), start right now. Since all these diseases are inflammatory in nature, it's important to adopt an "anti-inflammatory diet." Red meat is a potent "pro-inflammatory" food...the plaque that forms in your blood vessels when you eat it is your body's response to vascular inflammation. Fish, on the other hand, is anti-inflammatory...and full of omega-3 fatty acids. Just make sure it's wild-caught. All veggies are fine (especially the greens), but eliminate eggplant...believe it or not, it's PRO-inflammatory. If you can afford it, buy/consume only organic produce.

2. Your annual dental hygiene appointment? Step that up to 3x a year. Most people never think about this, but the mouth is FULL of bacteria, and it's important to keep plaque at bay. Of course, brush and floss your teeth at least 2x daily. Use a non-alcoholic rinse like Biotene to finish.

3. Whatever your age or gender, autoimmune disease requires that you drop whatever lingering vanity you might have about your looks...so stop dying your hair. Hair color is poison, plain and simple...you simply absorb it through your scalp. Then it kicks your immune system into overdrive.

4. This probably should have been included in the diet paragraph, but I think it's so important, it deserves one of its own. Eat yellow curry 3x a week. Yes, I know...it seems excessive, but the anti-inflammatory properties of turmeric and other Indian spices used in making it are very powerful. Learn to make it - it's easy to prepare, and you can cook your veggies and/or fish in 20-30 minutes.

5. Get your flu shot every year, and be vigilant about avoiding people who are sick. Wash your hands often, use hand sanitizer, etc. And no, you're not being obsessive. Another person's cold could land you in the hospital...or worse. And another thing: no cleaning cat litter boxes. Have someone else do the chore, or wear a mask and latex gloves if you must do it yourself.

6. Start taking MSM daily. Make sure it's in powder form (capsule), and that the brand you're using has the "Lignisul" logo on it. The only one I know of that is sold locally is manufactured by Natrol. The capsules contain 1000 mgs. each, and you can start by taking 3 a day. This anti-inflammatory supplement works miracles for people with arthritis conditions, muscle pain, allergies, and much, much more. I suggest you pick up a copy of The Miracle of MSM by Dr. Stanley Jacobs, who also happens to be the world's top researcher of MSM's practical medical applications. What you read will amaze you...you'll find it hard to believe how well it actually works, and in very little time.

7. If you drink, make it only occasional. If it's no issue to eliminate alcohol altogether, by all means do it. And I think the "no hard drugs" rule is self-explanatory.

8. Take up some sort of meditation-based exercise. If you do yoga, great. If you've never done yoga (or find it's too hard on your body), try taking up t'ai chi. This Chinese internal martial art is what I practice, and it may not look like much more than a beautiful set of circular motions, but it's quite the workout if you do it correctly. When I was first researching t'ai chi after my diagnosis, I spoke to a grandmaster in NY, who told me her lupus (which had infiltrated her organs and put her in the hospital numerous times) had been in total remission for 5 yrs. Naturally, she credits her total dedication to t'ai chi. She was the first person to tell me I could beat my disease, and encouraged me to take the bull by the horns.

9. Finally (and I know other things will come up that have slipped my mind at the moment), I know you're all wondering how our kind herb plays into my treatment. First of all, if you suffer from any autoimmune disease, you really shouldn't smoke anything. Even vaporizing is risky, as it inflames the throat (when you already have a predisposition to inflammation). I myself have not smoked in 5 yrs. or so. Cooking/baking with it, cannabis capsules, and Mother's Milk are my favored means of ingestion. The miracle that is cannabis never ceases to amaze me. It's a potent anti-inflammatory (as most of you with chronic pain already know). But one of the things anti-cannabis people are quick to point out (and they happen to be correct on this one point) is that cannabis suppresses the immune system. Well, that's NOT good for people with underactive immune systems, but fantastic for those of us who need its powerful immunosuppressive properties! I mean really - given the choice, would you rather take something like Prednisone, or possibly receive similar or equal benefits from MJ? I thought so. lol I took Plaquenil (a killer immunosuppressive anti-malarial) for a year, with no beneficial results whatsoever. It did make me sick, and I had to see my opthalmologist every 3 months to make sure the drug wasn't making me go blind! That speaks volumes about the poisons the FDA is willing to approve...and why the pharmaceutical companies don't want us to know the truth about the many and varied medical uses of a plant that they cannot patent, by virtue of the fact that it is a plant.

The beauty of using cannabis in edible form is that you don't need very much at all to receive the necessary therapeutic effect, and that effect will last for hours. I am never stoned...I never use enough to become incapacitated. Some patients might need more, as dosage needs and tolerance vary from person to person. Nowadays, I only medicate once every other day...and it seems to be enough.

I encourage all of you who are wondering what the hell is happening to your life to be proactive about playing the hand you've been dealt. Don't fold, and don't play into the darkest scenarios painted by the medical community. Furthermore, don't buy into the stigma of your particular disorder. If you find people in your life who are less than supportive (and you will, trust me), get rid of them. I'm serious - this is your LIFE at stake, and you need a stable support system: spouse/significant other, real friends, and supportive family members. Rid your life of the riff-raff, and be single-minded about getting your life back. No one else is going to do it for you. A "cure" may not be within your reach, but you can certainly improve the quality of your time on this crazy planet.

The best of luck to all of you.

~~ Lady D

[hum-dinger]

Wow, Lady D , you're certainly well informed and equally articulate. Exercise has been key for me, in that MS made worse by stress and is alson a muscle wasting disease. I'll try to get my post count up so I can pm you. Thanks so much for your help.
- dinger

[scorpgc]

A late reply, as I'm new but I second that to Lady D. I really do appreciate your sage advice. I think that your wisdom applies to many who are ill, regardless of what we have.

I was diagnosed with Polycystic Kidney Disease and have a lot of pain in my stomach and back and sometimes through my legs. I quit smoking cigs 4 years ago and don't want to smoke my medicine.

I bought some capsules at Harborside which didn't do anything for me. Lady D would love to know if you have any recipes that I can use for my medication. I do travel a lot as well, and this would be really helpful.

Thank you!

[nicksterguy]

This post is late, but hang in there man. My girlfriend was diagnosed with MS, it's the worst thing to not be able to do anything about it. Medical Marijuana helps though, it helps ease the pain a little, but most importantly, it helps relieve her stress. It's always good to her her laugh. Maybe I'll see if she can get on here and write about her experiences. Community is a good thing.

[halosmoker420]

My condition is so far lest drastic as everyone else's in this post- I've got abdominal post-surgical nueropathy as well as bilateral arthritic knees (after 4 surgeries). It's so encouraging to hear such positive spirits in the lives of our chronically ill WT brothers and sisters. You guys are all such an inspiration to continue to fight diligently and enthusiastically for our rights to safe access. I honestly hope and pray that your individual health challenges are easier to deal with for the years to come. Funny thing, God really has already answered all our prayers when he created the gift of cannabis. Yah God! To bad as with many answered prayers people are to oblivious and caught up with their own lives that they fail to see the answer that have been given to them. Peace and Love -

[susan]

Greetings,
I am a 35yo lesbian in Long Beach, CA that has multiple sclerosis.
I find that the rx works when I am having a reaction to my betaseron.
It also helps with migraines, phantom pain, and spacticty.

[jertay]

I am an MS sufferer. Tried 3 different injectables and multiple oral meds for symptom control & disease management to no avail. My spouse suggested MMJ for relief of muscle spasms(choking esp.) so I began to research the benefits. Lo & behold, there really are therapeutic uses with documented positve results. So I have been trying it for a few months( after discussing w/ my primary MD.) The results have been positive thus far. I will have to save my final decisions until I go for 6 months to one year without a significant exacerbations. I want to be certain that it is not a "placebo effect" instead of a true improvement. But I am hopeful. Too bad there is such stigma attached to it's use. ( I too am guilty of looking down on "medical stoners" feeling as if they are just looking for a legal high), but my opinions are swiftly changing.
I'd love to hear from others who have seen significant improvements in their health.

[jertay]

Good to meet you Susan. Glad to hear that you too are seeing benefits. I reacted so badly to the interferons. Felt like crap even between exacerbations, so I moved on to glatimer acetate, better, but still not having the energy etc... that I wanted back. I also hate the side effects of other " symptom control meds, ie, baclofen,valium,neurontin etc... Now I am off all meds except for multivitamins & the MMJ. I have my fingers crossed. So far I have improved energy,mood, less spasms, pain etc... no change in my "going problem" I still have to visit the toilet often. But het, we can't have everything huh?

Hi jertay!

I used to Glitimer (copaxone) then moved to Rebif.
Rebif did help prevent any bad exacerbations.

I'm currently undergoing cancer chemo, so I can't take any beta interferons... I'm worried about not being able to take my Rebif... The last exacerbation was a real blow to my balance and upped the neuropathy to the point where my hands are always on fire. But I guess one treatment outweighs the other.

By far the best bet for me has been cannabis, putting my eggs in MMJ's neuroprotective basket. Some strains like Trainwreck are great for the leaky bathroom issues.

And Welcome to WT!

Be Well,
Living Green

[darksteppa1]

Originally Posted by hum-dinger

I am 28 years old and was diagnosed with MS. I just don't know anyone else with the condition that I could talk to. Thanks for your help.

Im 25 yrs old and was diagnosed with MS(on the 31st) as well. We're in this fight together!!!