Group photo
Author:
UGLYFRUIT's Photo UGLYFRUIT Posts: 210
8/10/09 3:31 P

Send Private Message
Reply
Well i feel that i am coping with my MS really well but weight is high on my agenda and this is my biggest problem but I also a big believer hat a possitive attitude is the biggest achievement that i think is doing me good


emoticon emoticon emoticon emoticon emoticon emoticon emoticon


Uglyfruit

Take Care.


 Pounds lost: 2.0 
0
17.25
34.5
51.75
69
TABIRI's Photo TABIRI Posts: 47
8/9/09 11:33 P

My SparkPage
Send Private Message
Reply
Humidity causes my Vertigo to act up, Cold wind on my face causes my TN (I think because my Trigeminal nerve is so tempermental now.

I guess I'll see how I do in super hot humidity when I go to Cuba in October. Mind you, apparently (according to my neurologist and a bunch of clinical studies) equator countries have extremely low incidences of MS. (which goes along with the Vit D deficiency theory)

New Mexico is dry heat, I should try it out :D


 Pounds lost: 36.0 
0
15
30
45
60
HEALTHYBIZ's Photo HEALTHYBIZ Posts: 1,396
8/9/09 7:02 P

My SparkPage
Send Private Message
Reply
emoticon Hi Elyse and Welcome! What a great background you have for dealing with any illness. If I were younger, I'd definitely be studying Chinese medicine. So, I hope you don't mind if we pick your brain on occasion about natural methods for dealing with MS.

I've never heard of the cold causing flare-ups. Ugh. And I've just started to have symptoms with the heat that are so common to MS. So we've been looking at cooler climates for our retirement home. I haven't spent much time in a cold climate in a while, so I guess I better test it out for a while before jumping in whole hog! Thanks for the warning.

It's great having you on board here!

emoticon

 current weight: 179.0 
212
201.5
191
180.5
170
VALI_T's Photo VALI_T SparkPoints: (109,222)
Fitness Minutes: (110)
Posts: 13,476
8/9/09 5:36 P

My SparkPage
Send Private Message
Reply
Come on down here to New Mexico. We get "cold" in the winter sometimes, but almost never the kind of cold that you get where you live. Of course, my MS isn't particularly happy with the hot (yes, real honest-to-goodness HOT) that we've been getting recently, but at least you probably wouldn't see the kind of cold that triggers your TN more than once every 15 years or so.

If you do get that supplemental form of Copaxone made, I'd be interested in knowing how it works for you. I'm sick to death of giving myself shots every single blessed day, but I also know enough about how the human body (and its digestive tract) works to wonder if those proteins would survive through the digestive process and be able to do your body any good. I'd love it if an oral form of Copaxone would work....I just don't hold out a whole lot of hope for that.

I talked to my neurologist a couple of months ago about these new treatments that are going through trials right now that come in the form of pills. She told me that there seem to be a lot of problems with them (side effects and that sort of thing) so I guess for the time being I'll just stick with my shots and deal with the side effects I get once or twice a month from them.

Edited by: VALI_T at: 8/9/2009 (17:45)
There was much rejoicing!


 current weight: 216.0 
230
210
190
170
150
8RIGHT2DAY's Photo 8RIGHT2DAY Posts: 1,201
8/9/09 3:54 P

My SparkPage
Send Private Message
Reply
emoticon and emoticon to the team. I hope you find it helpful and supportive. Sounds to me it is MS with the symptoms with which you are dealing. Hang there and don't give up. Everyone I know has had good results with the Copaxon. It isn't a cure but it slows down the progress of the disease.

I hope you have a great week.

emoticon

Edited by: 8RIGHT2DAY at: 8/9/2009 (16:01)
Remember to be yourself, because the people that matter don't mind, and the people that mind don't matter.

The quickest way to failure is to try to please everyone.


Life is short! Break the rules! Forgive quickly! Love truly, Laugh uncontrollably..And never regret anything that made you smile.

I've come to realize that the difference in success or failure is not how you look, how you dress, or how you're educated. It's how you think!


 current weight: 150.0 
188
178.5
169
159.5
150
TABIRI's Photo TABIRI Posts: 47
8/9/09 3:22 P

My SparkPage
Send Private Message
Reply
Thanks for the welcome :)

Yeah, Copaxone is the only drug I'd ever go on if my symptoms got bad. Really it's just a synthetic form of natural ingredients (it's 4 amino acids with mannitol which helps it cross the blood brain barrier) I'm going to look into getting it made as a supplement and taking it orally. We have a nutritional chemisty lab here that will do custom amino acid blends.

My Trigeminal Neuralgia lasts for about a week. Last Jan is the first time I ever had to go to the hospital for it, they put me on Hydromorphone which helped in that it knocked me out for a good 20hrs/day and the other 4hrs I felt stoned out of my mind so I didn't really care about it.

I think if I get another bad flare up of it I'm going to go on IV toradol for a week. The injections and oral don't do anything, but I got the IV stuff the first day I went to the hospital and it was AMAZING. I went from being in so much pain I couldn't even cry, to being completely pain free. It lasted a good 8 hours :)

All my flare up come in the colder months, I think I should just move to a tropical climate then I wouldn't have to worry lol :)

 Pounds lost: 36.0 
0
15
30
45
60
VALI_T's Photo VALI_T SparkPoints: (109,222)
Fitness Minutes: (110)
Posts: 13,476
8/9/09 3:05 P

My SparkPage
Send Private Message
Reply
Welcome to the group Elyse. I've had symptoms of MS since about the age of 2 but was never sick enough to get a diagnosis until I was 31 years old. I've had all different kinds of pain related to my MS but I feel fortunate never to have experienced TN. I've never had any serious problems with my vision from my MS, either, thank goodness.

Before I got sick enough to get my MS diagnosis I successfully used herbal and nutritional therapies to treat some of the symptoms that I now know are a part of my MS. These days I use Copaxone and I've seen an amazing amount of difference in my disease picture since I went back on it a couple of years ago.

Anyway, enough blathering on about myself. I'm happy to make your aquaintance and I wish you the best of luck in treating whatever you are finally diagnosed with.

Vali

There was much rejoicing!


 current weight: 216.0 
230
210
190
170
150
TABIRI's Photo TABIRI Posts: 47
8/9/09 2:49 P

My SparkPage
Send Private Message
Reply
Hi!

I'm a 23 year old full time student who works 2 part time jobs as a nanny. I'm studying Traditional Chinese Herbal Medicine, Western Herbalism and Nutrition, and am in my last year.

I'm living in our nations capital Ottawa, Ontario. I'm semi-diagnosed with RRMS, my neurologist occasionally comes up with new tests he wants to do to rule things out lol. I have an AMAZING neurologist at the MS clinic at St Mike's Hospital in Toronto.

My main symptoms are Trigeminal Neuralgia 1-2x/year, Optic neuritis (2 flare ups) and possibly vertigo (they aren't sure if this counts as a relapse).

I'm not currently on any medications. I eat healthy, take a bunch of supplements, exercise and think positive :)

I can't do a lot of cardio exercises because anything that speeds up my heart rate also causes me to black out (a symptom of the vertigo). So I stick to walking, swimming and occasionally yoga :)

Anyway, that's enough about me! I'm happy to be here and wish everyone the best of luck!

Love,
Elyse

 Pounds lost: 36.0 
0
15
30
45
60
Page: 1 of (1)  

Report Innappropriate Post

Other Doing it with Multiple Sclerosis!! Introduce Yourself to Team Forum Posts

Topics:
Last Post:



Thread URL: https://sparkrecipes.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x1904x27585341

Review our Community Guidelines