Sorry to hear that you feel like you have been getting the run around... Speaking of which, you said you had Kaiser insurance... I am a nurse as well and fully understand the complexitities of Kaiser's "Healthy till proven otherwise" philosophy. And well, Kaiser docs won't go against another Kaiser docs dx... This is all my opnion on that insurance.
There are cases of people that, in fact, have MS with NO lesions seen on MRI. They still have MS. There are people that have very mild to very severe MS and EVERYTHING in between. There is no time line as to how long symptoms are around before they get worse, if they get worse. I don't know if you have MS. I do know that without lesions seen on MRI it is unlikely that any doc will dx you with MS because there are too many other possibilities of what can cause your symptoms, MS is just one of them.
Having said that, I FULLY understand the fustration KNOWING something is wrong, yet no medical dx, and the docs not understanding or knowing... Working as an RN in acute care and critical care, I have seen people DIE from small quirks and doctors not taking the patient seriously because their symptoms are so vague. For me, as a nurse, this can highten MY anxieties about my body and my health, not that any of these things has happened to me... Well being told I had MS was life altering ...
Since these symptoms have been going on for 12 years it is not emergently life threatening. You may never know WHY this is happening. You get to decide how much time, energy and money you want to put into figuring it out. Knowing that I have MS sucks. Somethings makes sense, other things don't. I WISH I NEVER KNEW!!! There is no cure, no defined course of the disease, medications are painful and expensive, and being diagnosed with a chronic illness really makes life hard in general, if it wasn't already.
And you thought you were long winded..lol. Well I wish the best of luck to you.
I only had testing done at Loma Linda, heart tests and a tilt table test, all were normal. I am now finding out that my symptoms are similar to fibro symptoms. Who knows.....
Post Edited (Deejavu) : 8/5/2006 3:40:47 PM (GMT-6)
Post Edited (Deejavu) : 8/6/2006 6:41:40 AM (GMT-6)
I'm sure Denise will answer you, but I just wanted to let you know that Lyme Disease affects all people differently, just as MS does (my sister-in-law was diagnosed with MS two years ago). It is speculated that there are over 300 strains of Lyme (that could result in differences) and that it will present itself differently depending on your immune system, your health, any weak spots in your body etc. Like MS, Lyme Disease does not have easy answers and there are many different opinions out there. It is possible that one could be infected and that your body could do a good job of fighting it off for a long time, then symptoms could worsen or come out after an illness, trauma or period of stress.
There are definitely those who think that a month or two of antibiotics will get rid of Lyme, but also many chronic sufferers who would argue that point. Obviously I don't have all the answers. If I did, I wouldn't be on this forum! But I do know that some people have taken months and even years to recover from Lyme Disease. Hence the controversy of the illness and prescribing antibiotics for long periods of time. I just wanted to throw that out there, so that you know it is a possibility.
I hope that you get some answers soon, regardless of what it turns out to be. I know what my sister-in-law has been through with MS. I have also been through it with Lyme. It's very frustrating not knowing. After I had a normal MRI, Echocardiogram, didn't seem to have a stroke or seizure, etc. the doctor's kept telling me, "At least you know you're not dying." I finally said out loud what I had been thinking all along - "How do you really know that?" Even now that I have a positive Lyme test it's still a roller coaster of emotions. I wonder that if there is no test that is 100% reliable for Lyme, what if that isn't it? I imagine that some with MS feel the same way since it is a clinical diagnosis, not a test that can confirm things 100%.
Thanks for listening! Peace and best wishes to all.
MS IS A DIFFICULT DISEASE TO DIAGNOSIS AND MRI ARE SUBJECT TO DIFFERENT INTERPETATIONS DEPENDING ON THE RADIOLOGIST. I WOULD GET A SECOND OPINION FROM ANOTHER RADIOLOGIST. NOT MENTIONING WHAT YOU ARE LOOKING FOR. SEE WHAT HE SAYS. DID YOU HAVE A LUMBAR PUNCTURE TEST? I CURRENTLY HAVE A DX OF MS 1989 NOW DX OF SJOGREN'S SYNDROME, WHICH MIMICS MS. 1991 A DOC LOOKING AT MY MRI WOULD NOT SAY I HAD MS, BUT HE WAS NOT A RADIOLOGIST. SO I GO WITH THE MS DX NOT REALLY KNOWING.
GOOD LUCK, HOPE YOU FEEL BETTER SOON.