Good news and bad news

I have been having tremors and leg weakness for years now. Recently it has gotten a lot worse. So off I go to a new neurologist. He was great - he spent 30 minutes with me and arranged numerous tests. So I go have an SSEP, EMG and MRI and blood work. I call to get results. NO MS!!!! Which is awesome but after 17 years, they still don't know what is wrong. I go back to the doctor in January. I asked the nurse where do I go from here. I still don't know what is wrong. She says, of course, the doctor will go over that with me in January. Well, I have been here before. Most doctors drop you, when it isn't clear cut. So, in one way I am relieved and the other way not so much. I have incurred all these medical expenses without knowing what is wrong.

I just had to vent. It is so frustrating. I know I am not the only one that have things going on and not sure what to do. Thanks for listening. If any one has suggestions......

Merry Christmas and God bless.

My best friend felt bad for years, Drs suspected MS, could never get conclusive results. She found an eye specialist in Baltimore, MD, and I drove her there. She was able to get the Dx, takes the weekly shot and is able to continue to work and be an active grandmother of 5.

I do not wish disease on anyone, but when your body keeps telling you that you are ill, you just have to listen. I wish you well, and hope you can get relief.



Thanks for the hugs SK. So are you saying that the eye doctor diagnosed her MS? It is so frustrating to keep getting negative results when you know something is really wrong. If I hear one more doctor call it "Conversion Disorder" I will scream. I used to run 5 miles a day, play tennis, etc. No one wants to be sick and disabled. I am only 52. It has been going on since 1 year after my car accident. So 17-18 years. You would think they could figure it out. Thanks again for your reply. It feels good to have support. My family doesn't get it. My husband is wonderful but the rest.....AAAHHHHH!

thanks again,

Hi Kallee,

Here is what you. Take 5 minutes, or 10 or 15, to yourself and scream, cry, curse and wail. Then you dry your eyes and keep searching. Conversion disorder is a bullshit diagnosis and is extremely rare according to my doc and my therapist. It is a fancy way of saying “it’s all in your head”. I had one doctor tell me that and he is lucky to be in one piece today. I wanted to go after him I was so pissed. They are also considering MS for me. So far all my tests have been normal and my only diagnosis is fibromyalgia (only one to explain the pain I am having). I am in an angry phase right now because my most recent rheumy told me last week to exercise, mainly yoga and/or swimming, for 45 minutes a day 6-7 days a week and I will be better. She is about 3 feet tall (ok, exaggerating) and I am 5’10’. I felt like squishing her like a roach! I don’t get mad much but when I do, watch out! LOL. I am not sure where you live but are you close to a teaching hospital? If so, you might try to get in there. The teaching hospitals seem to have the most up to date equipment and they also have the docs and students who are hungriest for knowledge and who will go the extra mile to research your case. (Think greys anatomy less all the drama)

Good luck to you and I hope you are able to get some answers. Meanwhile, I hope your holidays are happy, stress-free and pain-free!

Hi Kallee, I’m so sorry you have been unable to get any ans. I am also glad it’s not MS ! But I so understand the frustration behind not getting any ans. we have to just keep searching for the right dr. That understands symptoms… You are definitely not alone … I have learned by experience to ask the dr. If they would work with me to keep searching for the right diagnostic test, the right meds & the right treatment, if they hesitate or give me a half bull ans to my direct question, I know to not expect much… That’s sad, but I don’t want to waste my time or there’s. I usually know after the second apt.
Don’t give up…
Take on day at a time…
Have you seen an orthopedic dr. I’m just wondering if the weakness in your legs could be your back ?
I sure know that feeling of thinking you are on the right track then your hopes are shattered…
Keep the faith I know there are. Ans 's to all of our symptoms :slight_smile:
Hugs & blessings