I just spent a week at Mayo clinic, and saw 3 different types of neurologist, internal medicine, sleep and more, along with tons of labs, EMGs, movement study, EKG and echocardiogram.
Everything was normal except a mildy elevated ANA. They said I had chronic fatigue, possibly fibro (which I was diagnosed in 2004), depression, imbalance, and other symptoms.
Then I get a call from the doctor that the labs that were pending showed a low titer, and I need to see a specialist in neuroimmunology abnormalities. It doesn't look good, and I have to wait until May 16th to see the specialist.
I will try to stay positive and not dwell on it, but it will be difficult.
Stay positive we will be here for you. Waiting is the hardest thing in the world to do but remember we can not do any thing about it so try and find some thing to stay as busy as you can and rest when needed. Send me and email when you feel up to it and let me no how the children are doing will they return home or stay here for another school year?
I'm glad to hear that you're getting some answers. I also have cfs and It's been a little confusing where to focus my attention. I've heard of getting Titers checked when you have cfs. My family doctor and Internal med doctor have done all if the blood work(with the exception of one that i have the requisition for)and everything is normal except an elevated white blood cell count. no mention of titers...
May I ask where do you live? I live in Canada,Moncton New Brunswick to be exact,and so far there doesn't seem to be anything that comes close to the kind of investagational type place for fibro patients to go to. I'll have to wait MONTHS just to get in to see a rheumatologist. I'm still in the baby stages , trying to get my head around what kind of action i'm suppose to take.
How do you qualify to get in to places like Mayo clinic or others(if there are others...). I use to think that Canadians were so fortunate because of our health care system but I'm afraid it's gone down hill and it's harder and harder all the time...waiting in line for sometimes years to see a specialist.
All the best of luck with your next appointment and please let us know how it goes
As you have just spent one week at the Mayo Clinic you must be overwhelmed at all the different doctors and labs etc. you attended. Your head must be spinning. Then to get a call from one of the doctors about something you should follow up on would be just too much to wrap your head around. What is meant by "a low titer?"
Right now you will need much rest and probably extra sleep after such an exhausting week.
Titer levels. It"s how they measure the level of antibodies in your blood. I've heard people with CFS talk about having low titer levels. It has to do with the immune system.
Thank you all for your support. I have been exhausted, trying to get caught up on resting after the busy and stressful schedule, but Mayo Clinic was very nice and thorough. The low titers (not very high level) were in the following blood tests:
* GAD65 AB Assay, S at .06 (normal is <= .02) (Interpretive comments: autoimmunity with brainstem, extrapyramidal and spinal cord dysfunction.)
* P/Q type Calcium Channel Ab .05 (normal is <= .02). (Interpretive comments: antibodies in the Lambert-Eaton myasthenic syndrome and other paraneoplastic syndromes.)
I asked the Dr. since I took Prednisone for 2 months could it have kept the numbers lower, he said I would have to talk to the specialist, (which is not until May 16th). I looked some of these conditions up and they are sometimes treated with prednisone. I am trying not to spend anymore time looking information up or thinking about it, because that doesn't help my mood at all. So I am trying to be positive and enjoy the sunshine, and maybe do some crafting.
See my other comment about titers. It took 5 months to get into the Mayo Clinic in Rochester, MN. Sorry, I don't know how it works in Canada. My insurance covered, but some people in the states there insurance doesn't cover. There are patients that come to Mayo Clinic from all around the world, it is a highly sought after research medical facility.
I went because my family and doctors were sure I had MS or some other neurological or rheumatological disease, because my symptoms are much worse then fibromyalgia. Now I just need to wait another month, and go to Pain management clinci and PT in the meantime.