I was diagnosed with Fibro 5 years ago. I was so relieved just to have an answer for the pain & issues that I've been dealing with since I was 19 years old. After one year of treatment, I lost my insurance (after my husband lost his job and was put on Worker's Comp in Wyoming) and lost my doctor. I make just enough to not qualify for anything. So, now I have a preexisting condition and cannot afford insurance.
Now I am in painful limbo. I hurt everyday anymore. Knowing it will just get worse is hard. I stay active, I eat healthy, but the runs & hikes are not as long as they used to be. I am at my wits end.
Does anyone know of any help for uninsured sufferers?
I was diagnosed FM after a semmingly minor auto accident. Later It turned out to be recurrent CSF leaks. Do not excise or lift weight, that was how my condition got worse and now half deaf. Try to be less active or even bedrest if it is possible, if you respond to that well, you might have similar situation. For CSF leak, lying fat and avoiding exertion is the best because upright and exertion will increase the pressure in your spine and make the tear/tears harder to heal.
Even you have insurrance, good luck to convince your doctors that real cause of FM might well be CSF leak or recurrent CSF leaks.
If the leak is bad and it reduces the pressure lower than 60 mm H2O, the deaf rate is 50%.
Sorry about your condition.
Have you tried the Epidural Blood Patches Treatment that has a much higher degree of success (90%) compared to bedrest and inactivity?
While there's no denying that FMS may be mimicking other conditions with similar symptoms, the odds of an FMS diagnosis actually being CFS leaks, are extremely small.
CFS leaks happens in 5 per 100.000 people, and FMS is seen in about 2000 per 100.000!
So, should every single case of of CFS leaks was originally misdiagnosed as FMS, it would still only be 1 case in 400 or 0.25%.
I understand that most posters are well meaning and eager to help.
But they must be careful, not to influence other sufferers, based solely on their own personal situations and experiences, specially when they happen NOT to be very representative of the particular condition on hand, such in this case here.
As far as insurabilty goes, the FMS cause is not pertinent.
The reasons where already stated in the original post.
Having said this, any information presented here, reflects just someone's
own story or opinion. Doing careful research and checking with your
your Health Care Professional first, is always recommended.
Watch my words if you live another 50 yrs that FM, migraine, chronic fatigue symdrom and chronic whiplash associated disorder are all caused by different levels of CSF leaks and I was given all the above by different doctors. I can only thank myself for figuring out and insisting on checking CSF leak, not the large medical expense of a lots of doctors in different specialties.
The reason CSF is not considered more often because of the deep rooted and widespread belief among doctors that CSF leaks are rare and it should have healed permanently soon after the initial tear. I do not understand why you thought the statistics would not change, especially the exact causes of all those diagnosis are still unknown.
I do not know who you are, I am not native to America and I had no medical training. Could you explain why I was the one who found the exact cause, not all the expensive doctors?
Blood patch does not help larger problematic site resulted by years of misdiagnosis, Mayo clinic would recommend a surgery.
I am being responsible. Colleen does not have insurance, I just want to remind her that doctors do not know the exact cause of FM anyway and pain med can only mask her problems and make her feel that she can do more than she should do. She is feeling worse, what is wrong to tell her something worse than pains can happen if she is actually having the same problem as me and rest and less exertion can protect her more than doctors who probably will not see her without insurance? I do not have to glorify doctors, at least most of them.
Do you have any references on any research or studies done
on CSF leaks?
I'd like to find out more about it, as I'm doing more research on A/I conditions and FMS currently.
I understand well how the medical system works.
It's in a very dysfunctional state unfortunately.
Can you message me directly? as it is against forum rules to post links.
"Chronic whiplash"'s long term prognosis has been poor; higher percentage of Pakinson, MS and others. As I stated, it is normal for a immune system to clean up damaged nerve cells, but the nerve cell is slow to regenerate, especially the damge is ongoing and it might look like AI. At my worst time, my head and my hands shaked involuntarily, similar to people with Pakinson.
colleenmarie537, sorry if you feel that your thread has been hijacked!
I hope that some of the replies were helpful or at least educational.
joyce42063, MedHelp, a forum with probably millions of hits per month and a huge number of posts, must have certain rules in place. Do not feel necessarily targeted, as their only concern is that they rules are respected for the smooth running of the forum. Any arising controversy from posters that may interfere with this, is met with usually a warning and or removal of a posted reply/comment. There are circumstances where the reply/comment is incorrectly posted in the wrong part of the forum, so it gets moved to the appropriate place, but not without a notification issued to the poster.
I'm just another member here, but I have a pretty good sense of how things work.
Should you want to share some of the information that got removed,
please send me a personal message (from the profile box that opens upon placing the curser over my name in blue).
I was an "almost" victim of Iatrogenic damage. Best thing that happened to me actually at the end! More another time.
My replies to you were mostly about how CFS leaks would explain all the symptoms of FMS and chronic whiplash associated disorder (WAD), and why I gave another 50 years for doctors to get new statistics about CSF leaks. I am also concerned that the Chiari specialist I saw seemed not bothered by the possibility of CSF leaks causing brain sagging because he thought that leaks should have healed long ago. His Chiari Institution is advertising treatment for FMS (brain surgery, that is what he does) on this website, how scary!
I could only find one research about whiplash and CSF leak by Japanese doctors, it is still on the first page if you use those two keywords. They confirmed leaks in 37 of of their 66 patients, it is very significant because the standard protocol (flat position) of radioisotope cisternography is not effective to detect leaks and some patients' leaks might tempararily seal. There are doctors in America who believe that WAD is real, not psychological and very costly, but the research by Japanese doctors was dismissed in one sentence in recent symposium of WAD, the relationship of WAD and CSF leaks has never been established. It is safe to say that people will continue to suffer; doctors are not interested in WAD and CSF leak because CSF leaks are thought to be very rare. Well, it should not be rarer than CM.
10% of people with whiplash type of injuries still have all kinds of symptoms after two years, which can not be explained by initial relative minor injuries. Some of them get worse with time; I got worse fast within two years. It is safe to say that some people will leak from events less than auto accidents. If they get worse with time and become more symptomatic, they might not relate to the events thought to be nothing at the time. We do not know how Colleen got her FMS, it might be a hard fall or contact sports which was not very symptomatic at the time.
It is known that some people with unresolve leaks eventurally will have a lot of nerve demages and end up completely debilitated. If the whole central nervous system is less protected and in stress, it might mess up the immune system (A/I) or the immune system cleaning the damaged nerve cell looks like A/I. The overracting nerves of FMS might not be overracting. What observation makes you want to research FMS and A/I?
Joyce , it seems that CFS leaks are very under-investigated, as there's been extremely few studies and research. I did a fast check online and you're absolutely right, there's very little information available .
What kind of testing have you done for your CFS leaks-( have you done radioisotope testing?) and what type of treatment is available for this other than the Epidural blood patches, that I mentioned earlier?
I'm constantly working on improving my A/I and fibro wellness program, based mainly on Energy Medicine and Hypnotherapy.
The methodology is very unique, as I "dissect" as many aspects of a condition possible, with a bottom-up approach treating each aspect separately.
The more I understand a condition, the better the dissection and consequently resulting in higher accuracy.
In CSF leaks,
Theoretically, the immune system, in time corrects the damage, by repairing the dural membrane, however, there's the possibility-barring a
compromised immune system- that scar tissue formation compresses upon the nerves and may confuse patients and doctors alike, thinking that the WAD or CSF leaks symptoms are getting worse!
I'm in the same boat as you and I know how difficult it is I had insurance when my husband was still working and now I'm stuck specially after knowing I was misdiagnosed there is no way this chronic pain is arthritis. I searched around in my area from specialist that can give me a proper diagnosis and that will accept a payment arrangement cause I will self pay for these check ups I found BACK2HEALTH and before I even told what was wrong with my I asked them first if they take payment arrangements cause I don't have insurance and my parents will help me pay my bills I'm so happy I found them I just googled and type in doctor's that accept payment arrangement and they showed up on the list. I have an appointment next week hopefully I can find out what I have cause this is driving me crazy specially after the judge stated I was basically making my pain worst than it really is cause I guess when I went to the medical exam i passed the exam although i was in tears doing it.
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