Oh, dear I'm so sorry to hear your hopes were dashed for a partial solution.... I understand and can totally sympathize.
We think, oh, there it is, something that might help...even a little. Then we put ourselves through the testing and feel so let down when, as usual, they come back "normal" when we know we are anything but normal. If we were normal we'd be out living our lives as we did when we were not so ill.
I have no answers, only hugs and support and so those I do offer...

I am sorry about your disappointment. I know I can relate to being frustrated about negative test results. I'm sure most people would be so happy to hear nothing concerning showed up on an MRI, but for us it means once again having no effective treatment. I gave up running from doctor to doctor a few years ago - it is much more peaceful, and they did very little to help, anyway. I understand how you are feeling.

I remember getting a call from someone in a doctor's office telling me that my test results were negative. She sounded so upbeat and seemed totally baffled when I didn't sound at all happy to hear the news.

You get so desperate after a while in your hope that you have something, anything that's somehow treatable instead of this neverland of ME/CFS.

Oh, honey, I feel that. I have hoped, time and time again, for another diagnosis that would have some treatment that might work on some of my symptoms. It is heartbreaking to go downhill and not even have a plan to fight back. Doctors can be so disappointing when they have a secretary call and don't even give any hope for a treatment plan. I am so sorry. I truly can empathize with how you feel. Hold your head up. Love and blessings.

thank you thank you. it helps to have told some people who understand why "good" test results are so disappointing.

I am so sorry lindasch100 and I feel bad that you were not able to talk to the doctor. Even if he had no further suggestions, he should have called you himself. I hate the discourtesy that is such a large part of the medical environment these days.

Well, we are talking a neurologist. Mine had to cancel an appt last week and I got a call back to reschedule.... in November. sigh.

So sorry for that discouragement. I totally understand. I've had docs look at me strange when I cry after getting a "negative" test result. They ask "What, did you *want* to have that?" My answer--it's better than having no idea what the cause or solution is to this never-ending pain and exhaustion.

It's not easy to let go of these things, but I encourage you to spend some time today thinking about the things you enjoy that you *can* do. And Do more of them. We make the best of what we're given and find joy wherever we can. Hugs!

I could really relate to your post. I know that feeling of hoping I will finally have a diagnosis only to get the results of everything is normal. It is so discouraging, especially if you have been through the same scenario again and again. One of the hardest parts for me is not having any answers and not being sure which direction to go in. It helps me to allow myself to feel my feelings, not minimize how tough things are that I am going through, and being really kind to myself. Someday they are going to figure out the cause and the cure for this disease and people will say wow, how did those folks manage with that syndrome without medications? Before Multiple Sclerosis was scientifically understood, they diagnosed people suffering from MS of hysteria, but of course they were wrong, and someday people will have a better understanding of what we are going through. I wish you blessings and love.

Linda,

I'm sorry that you feel you aren't getting better. I would say that the 70lb weight loss is amazing!! That is something to really be proud of. Also, taking steps to do physical therapy is really great too. It sounds like you are really making some positive changes.
I do understand about not being able to improve the fatigue. It can be so frustrating. On one hand, I am sorry that things didn't work out for a potential improvement, but on the other, it's great that things are looking good neurologically and that you get to avoid a potentially complicated surgery.
The most important thing for me is to always have some sort of plan. It gives me a general direction to be moving in, because I refuse to lose hope that I can improve. Based on some of my research, I recently had my two amalgam fillings out. It's been about 6 months and I have seen some improvements. I think it's probably worthwhile for anyone suffering from a long term illness to get tested for heavy metals. I am also getting my entire hormone panel retested through Precision Analytics. If you can find a Naturopathic Doctor who is knowledgable about that sort of thing, I think it's a good test.
I know it's easier said than done, but try not to lose hope. You never know when something may change or you might find something that will help you. I know some days are a battle, but it really sounds like you have made many positive improvements.

I understand your frustration with a negative result...I surely do. Sending support and solidarity. xo

Yup! wish there was something I could fix. Better believe me, I would run right out, well walk carefully, to the nearest pharmacy and beg for the solution. Not to be.

Pilates helps me keep my strength up, I need it to get in and out of cars, trains, planes, etc. Still hope to travel a little more. Weddings, etc. all good things. ONLY.

In pilates you can go at your own speed. I have a partner whose ten years older than I am. and I'm 75. I stop when I must. But keeping some strength and mobility does make my life easier and lets me keep some dignity. I hate to be pulled out of chairs.

It's so frustrating that there is so little we can do for ourselves. I do still take Xyrem for sleep. And it's been a miracle for me. Good sleep is half the battle. and I use my vpap machine every night.