[scaredandconfused]

every doctor says they don't know what you have? I'm two years out. The last thing they tested for was mitochondrial disease and it came back negative. How do you deal with it? What do you do when faced with the future of never having a diagnosis?

I have seen doctors all over the country. The last doctor said I was a big complex mess and I shouldn't be having these symptoms at 33. Well I said welcome to my life.

Any advice would be appreciated.

Thanks
Marti

 

[Postie]

Hi Marti

I don't know all what tests you've had or what kind of docs you been to. I've had an illness for 10 years and I'm still in limbo.

I became sick in 1998 and wasn't diagnosed till 2003--4 years later and that's with CFS. That's a syndrome because I never had a specific disease. So that's all I have after 10 years and it's not much.

CindyLou

 

[Lily]

Hi Marti :hugbetter:

I thought that they said you definitely did have Mitochondrial Disease Have they now decided it isn't?

love
Lily

 

[Willow34]

I am sorry you are going through this. I have had the same problem. I started having trouble with my knees and jaw at age 15. I am now 34, and my symptoms have not gone away, but gotten worse. I still don't know what it is that is causing it.

At first, they told me growing pains, then chondromalacia patella (is that how you spell it?). I was told to do exercises to strengthen my thigh muscles, but it didn't work. Then later on I started to have severe inflammation, with warmth and redness... and my GP thought for sure I had RA. I had been tested for the rheumatoid factor, but never tested positive. When I was tested during a flare, it did show up weak positive, but then went back to being negative.

I went to see a specialist and he said I couldn't have RA because my toe joints and finger joints were not involved and after all these years of problems, I had no bone erosion. OA was ruled out.

That was last year. I left his office still wondering what it is. He said he suspected serositis in my lungs and the year before had sent me to get a chest x-ray, which showed up nothing...but he said he wasn't ruling it out. That was the last I heard from anyone. A year ago.

My GP told me that if I experience anything again, to go see him asap. So at least I know he is concerned. I am going to see him next Tuesday.

All this, in my long winded way, to say I know what you are going through. Two years is nothing, but I know it is two years too long for anyone! Like I said before, I am so sorry you are going through this. Don't do what I do. I leave it go. My thyroid is not working now because of the flares and not being treated. You need to stay on this until you get some answers. Because, if you don't, your symptoms could get worse.

 

[cemc]

I'm the same. I've become increasingly disabled over the last three years, but in hindsight I recognize that all the symptoms I have, I have had before, on many occasions, but not usually all at once, and never as bad as now. I am getting really frustrated because I think that all I need is ONE good doctor to sit down and do a full history and workup, and then make a proper plan for investigating. Instead of which I have been referred to about 6 different specialists and clinics, all of whom seem to test for one thing, then discharge me when that is negative. At the moment I am waiting on another referral to a neurologist, though I don't think for one moment all my problems are neurological. I am hoping that that neuro will be sensible enough to re-refer me to rheumatology and possibly dermatology as well to get things looked at again. Why don't they seem to make good general physicians in the NHS? Well, I guess I can answer that - its because you can't get a good assessment with 10 minute medicine, which is about all you ever seem to get here.

One thing I am doing right now is trying to get hold of all my medical records (from all sources), and going through what tests I have had and when and what the results were. I don't know if this will help or not, but it might give me some information to take to the next specialist I see.