Lisa, I've been off the forum for a few days as I was away, but I just want to chime in. I can't imagine the complex emotions accompanying that result. I can only add to the chorus of voices saying you absolutely belong on this forum as long as you feel it is of benefit to you. Thinking of you.
Lisa,
I am always amazed when I start rehearing the stories of all my friends here who have been through limbo-hell and continue on, rather than give up and resign themselves to living with all those symptoms. I know you wont give up either, but you may need to step back, gather strength and regroup.Then plunge right back in on the search.
I also want to acknowledge how much you miss Mary - her absence here is felt by all of us.
We'll still see you around, right?
hugs,
Laura
You know, when I read stories of everyone else's ex-neuros and their supposedly expert judgments, they all sound so similar to mine, among the five (+/-?) I have seen in the past. Giving number 6 time. This guy really seems to be listening, so far. Not only that, but he didn't seem intimidate byd, might've even been appreciative of a patient wwho's do e some homework over the yearz to become informed and conversant in the subject. 6th time's the charm? I du no. Maybe it'll take nine but quit is not on my list right now. Lisa, we continue to appreciate you, and a slew of ithers around here.
Lisa,
I like your attitude-whatever is wrong will be diagnosed. My former Neuro told me that I would die, before anyone figured out what was wrong with me.
I didn't give up-I knew the answer was out there. Like you, I knew it wasn't going to be as timely as I wanted.
I feel that you contribute a lot by staying in this "Forum Family". You set an example for everyone living in Limboland, not to give up.
(((HUGS)))
Sheila
Lisa, I am terribly sorry for the frustrating position into which you have been thrust. I do wish you could have an answer for all you are experiencing.
I can not understand why so many MS specialists (and I use that word loosely) place so much weight on the results of a lumbar puncture. When I was going through the process my LP came back negative, as did my visual evoked thingy. Between the symptoms I was manifesting and the lesions found on the brain MRI my neurologist made the diagnosis without hesitation. The "specialist" I went to told me it was age (52 yrs. old) and that I was 40 pounds overweight. I went home from that appointment crying and wondering what KoolAid he had drunk.
I said all of that to encourage you to keep your chin up. Find a doctor with whom you click and can have trust. Your answer is out there. Call it, "The Thrill of the Hunt." I am praying for you to have courage, and take heart. God has not lost your address.
Beth
Lisa,
For over a decade I was told by doctors that I had CFS, CFIDS, and a number of other things that I can't remember right now. Like you I also had no o-bands, and some a-typical lesions in my brain. I have been dealing with this since 1988.
IN the end in 2010 I finally got a PPMS DX after I finally got a spine MRI done that showed a lesion there. IMO any doctor that says you have CFS just doesn't know what is wrong and doesn't want to do the work to find out what is wrong.
Dennis