Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Keep the Doc or Drop the Doc

Look here you, when I sat inthat dive in Toronto I played piano (Summertime) with you one fingered, and it sounded sort of alright....errr......ish ish..............well errrr.......perhaps just as well that that nice lady through you out...

Yes, my dear, but you were using one of each finger on your hands!!!

And it was wonderful and that silly woman didn't know true artistes when she heard them.

Warm hugs,

Was quite a nice hour wasn't it, and we have still to hear from you why you were sat in a bier keller with an erect umbrella....lol

and truth be told, the rheumy even admitted to not using the computer, everything hand written

i agree with DragonSlayer - i got a Rhuemy appointment next week, i already know what he is going to say as ive heard the same old dribble 40 or 50 times already from a wide array of Rhuemy's.
I was thinking of really peeing off this new one - going to the appointment wearing a hat with my ipod shuffle hidden in it playing "rage against the machine's - KILLING IN THE NAME" on full volume, so he gets a feel of what its like in my shoes when i dont listen to a word HE SAYS!! ill just smile a lot and nod my head.

when i see his lips stop moving, ill get up and say , see ya in 6 months...dude and go for the high 5 and chest bump!!

Well, I think she's kinda on the right track - albiet very slow about it. Sounds like she's looking at the TNF's next; I don't know your insurance's requirements but it MAY be true that you need MTX first. Some do, some don't AND it depends on what your ins company will allow for meds with an AS Dx. Maybe she's put you in as RA so you can GET the drugs. I don't know ins. is such a complicated mess for us.....

She does seem a bit unfriendly and not explaining things very well.

I will say I'm on MTX and fine on it. Make sure you take the Rx folic acid with it. Your body gets used to it and I don't feel any effects after taking now. AND you need it if you are going to go the remicade or enbrel route - it keeps you from making anitbodies to the medicine and keeps it viable for you longer. And the extreme fatigue listed on the poop sheet is for people who are taking it in much larger doses for cancer.

I'm ALWAYS a fan of 2nd opinions. Can't hurt to hear another docs perspective.

Good Luck!

Jewelz

Yes - I've had no fatigue from mtx and been on it close to six months now. I'm not sure how effective it is but the side effects are minimal. I do take folic acid.

Sounds reasonable. I had some time today to think about it and roll around all of your comments. It sounds then like its the "norm". She may be a little slow but we are still getting to know each other i guess. I guess i got a little fired up about maybe getting some relief but it sounds like a little relief is all we are going to accomplish on the meds. I always keep leaning back to DragonSlayers "extreme" belief in the NSD. I wish i could hear more people saying they have gotten the same results. It seems as if many try it but not with the same results. I have tried it but not long enough. Now i am more on the LSD diet and i say that i at least feel better overall but not pain wise. More like belt wise. I wonder if the diet falls into the same category as everyone reacts different to the meds. Maybe not everyone reacts the same to the diet. If thats the case then we cannot kill the doctors because they are all we have for now.

im doing the NSD strict as I can. (if it doesnt pass the iodine test i dont put it in my mouth). its been a little over a week and im feeling at least 50% better than i was just 2 weeks ago. even with the little taste of rice hiccup, which for me flared me very quickly, but only for a short time (36 hours or so).
the rice tasting hiccup was a good thing really, because it proved to me that starch was indeed associated with my pain levels.
im not saying wow im cured "its a miracle" but i have no doubt in my mind NSD it is helping my pain level more than any drug ever has alone.
my toilet habits are even changing. ive gone from 7 or 8 trips for No2 a day to now 3 or 4. Even No1's have changed, im going a lot less often and the volume coming out each time is heaps more.
before i started the NSD the time from feeling i need No2 to having one was like 1 or 2 minutes max. Now id say that time between feeling and needing has increased to at least 10 - 15 minutes. I feel much more in control of the whole toilet situation than i did before. BIG TIME

i must add - i have cut milk, cheese, butter out of my diet completely also.
the only dairy i am currently eating is eggs & a tub of natural yogurt daily with some fresh whole blue berries mixed in.

Wow!! less than two weeks and 50% better. Thats more like miracle work there. I did it the first time for around two weeks and like i said i felt better but no big noticeable changes in pain. My biggest problem is trying to feed the family and trying to buy specific foods primarily just for me. If i could convince the whole family to do it then it would be much easier. I guess what i am saying is its not that i don`t believe it is beneficial. I hope it really is the key. I just need more proof that this is really the key before i can for myself and for my family convince them to change a large portion of our lives around. I already have to give up beer which is really upsetting because thats the only thing that seems to help a little. But if i want to keep my liver, beer has to go on the Methotrexate. Do you see my battle? with Docs i have to give something up. With NSD i have to give something up. I really just want to figure out which is the right path. So far i`m not convinced either is. So far i can only see reducing some pain and extending the time between fusion.