New Study For FMS

[BrokenBladder]

I heard about this over the TV and radio. I'm not sure which state are included in the study, but you don't need health insurance as they pay for everything. I'm just posting the link, I haven't really had time to research it but I'm hoping for something good.
Here's the link http://www.mlnstudy.com/

[MichelleC]

Wow, there's actually a center two hours away from me.... the eligibility requirements say that you may have to discontinue whatever medicine you are already on. The locations are in AL, NE, NC, SC, OH, NY, & FL.

Thanks for sharing the link!

Michelle

[BrokenBladder]

Michelle your very welcome!! I read more into last night an they seem to like opiods and pain killers so I don't think you would have to stop those. Anyway seems like something that could be interesting and there is a center about 6 miles from me, but I wanted people on the board to check it out and give me an opinion.

[lobelsteve]

Michelle your very welcome!! I read more into last night an they seem to like opiods and pain killers so I don't think you would have to stop those. Anyway seems like something that could be interesting and there is a center about 6 miles from me, but I wanted people on the board to check it out and give me an opinion.

It looks like a scam. I did not see the name of any doctor or PhD, who was funding the study, or the typical information posted when enrolling people into a study. I am wary as I have seen a number of these in the past. THey always just want your money. Many of them perform unstudied, unfounded, and potentially dangerous treatments while charging you enormous fees. The big tip off is the ABN form you sign when they get your insurance information. They submit a bill they know your insurance will not cover, and the ABN form makes you financially responsible to that clinic.

Real studies are University based or sponsored, or list the sponsors as a reputable national society. As FMS has no good treatment options, most sufferers will take and try any available option. In fact, most people with the diagnosis do not even have FMS, but it was covenient to tell them something in that 7 minute office visit. We often undiagnose FMS after a thorough H&P and some labwork. I disagree with some of the leading Rheumatologists who say you can have coexisting connective tissue diseases and FMS. The CTD causes the symptoms. FMS is a diagnosis of exclusion, until more research is done with functional MRI and we can get a better understanding as to the pathophysiology of the disease. Give us some credit, FMS has come a long way from 10 years ago- when most docs would just say it is all in your mind or that you were crazy. I think it is hard for docs to say that they have no clue as to why this is happening to their patients, and no good way of treating it.

[suede]

Lobelsteve, Maybe you can answer a question for me.
I have dealt with many spine disorders and nerve damage for about 8 yrs now and a couple of yrs ago my PCP sent me to a rheumy for more testing as many symptoms didn't fit in to the problems I was already having and my ANA keep coming back abnormal.
LOng story short after a day of testing and such the rhuemy 's Dx was that he "believes" I have mild lupus with underlying FM< whatever and has been treating me for 2 yrs now with plaquenil and no more test or nothing. well the plaquenil really did help with much of the joint pain.
However I was dx'ed this week with macular degenration and see a specialist the 20th, the dr I saw this week said he does not think it is due to the use of plaquenil and explained why.
Questions??
Should I seek another rheumy that will comtinue to search for a more reliable dx then just I "believe" and about the plaqenil what do you think?
By the way the dr this week also told me that I'm rather young (53) to be having macular degeneration!
Thanks.
Linda

[Tootsie]

It is a recognized fact, that anyone taking plaquenil for whatever reason, should be seen annually by an opthalmologist as visual problems are known to be a side effect, of the drug.

Why does the opthalmologist feel that the macular degeneration is not due to the plaquenil? I do not know what kind of eye problems are associated with plaquenil use, so wonder if you can ask him why he has made that decision.

Certainly, if the plaquenil has been effective in controlling your pain, I see no reason to discontinue it UNLESS it is a complication of the plaquenil. Have you considered asking for a second opinion from another opthalmologist?

You might try posting on the Lupus or Autoimmune Disease Forums and see if folks there have some information.

Keep in mind that lupus is a notoriously difficult disease to diagnose. Frequently, symptoms will appear long before any laboratory testing will show abnormalities. Many people with the condition lead very normal and active lives. Cheerio.

[suede]

Tootsie,
Thanks for yaking the time to respond, I appreciate it.
I had thought about posting on the lupus board but I saw this post from lobelsteve and thought I'd ask..
I have been having my eyes ck'ed every 6 months.
I was having some vision problems that I thought was just needing new glasses, only I was really wrong!!
I may be wrong in the way I explain this but the way I understand from what my opt. said is that if the plaquenil was the problem I would be losing my eyesight on the outer side of my eyes but I'm losing my central vision.
He said in his opinion he would not recommend stopping the plaquenil, so I will see what the specialist says the 20th and then see my rhuemy.
I was blind was before and when I got my sight back I had double vision for over a year so I know what it can be like and I really hope that I don't have to go through that all again, I would quit the med in a heartbeat if I thought that was it but I doubt it.
I just thought lobelsteve might have some answers.
I know how hard it can be to dx a auto-immune disease it's just so hard living with all the maybes and might be sometimes.
Linda

[Tootsie]

Hi Linda,
It sounds like the opthalmologist has given you his best thoughts on the matter of whether the plaquenil has affected your eyesight. Considering you history, though, there is more than enough to warrant treating this as a separate problem.

That's not much help or comfort, is it? Keep in mind that there are marvelous new drugs, treatments and therapies being developed all the time. I was just reading the current issue of NEWSWEEK about all the uses of stem cells. It is mind boggling and will be years before they are available. However, hope is always there. Courage! Cheerio.

[suede]

(((Tootsie)))
Thanks,
Linda