FMD Relapse is worse than the first time.

[smacki2]

I was diagnosed with FMD 3/18. I had numerous ct scans and MRI after 4 trips to the ER they diagnosed me with FMD. I was unable to walk...I had tremors in my legs, right arm and my mouth. I lost my speech within 24 hours. I went to speech and physical therapy 3 days a week. I saw a behavioral counselor. And after 8 months my symptoms went away. On Thanksgiving Day all my symptoms came back, but now I have full body “seizure “ like episodes. It starts in my feet, legs,hips, back, arms and finally my head. I struggle to catch my breath. Episodes last 1-2 minutes. I get them anywhere from 3-9 a day. It is exhausting.

I’ve tried calling the neurologist several times this past month. He calls me yesterday and asked if I remembered him and he was aware that I’ve called in several times. He said “I thought I was clear with you the last time, but apparently not. Your disorder is not neurological and there will be no need to follow up with me.” He hung up. I am frustrated because he wasted a month of my time, when I could have reached out to another neurologist. I’d like to get a referral to the Mayo Clinic.

[Paddoodlz]

I am so sorry this has happened to you! This has happened to me and keeps happening to me so I understand what you are going through. I am not sure how to help other than to let you know that I am here for you as is the rest of the group . The one thing I have tried that helps is chiropractic. Not the manipulation techniques but the other. It has held with my walking but the episodes keep coming. Good luck. Keep positive and message me anytime!

[AprilMorris12]

You have a horrible neuro who is heartless! That I have experienced in the past. You have to see a neurologist that specializes in movement disorders like dystonia for FND and functional disorders. My neurologist she specializes in movement disorders like Parkinson’s and dystonia. She give me Botox shots and litocane shots in muscles and migraine trigger point areas. Basically medication and that with therapy is the only thing we have to help is function and sometimes nothing helps it just lessons the situation some. I’m on year two of the illness and year one of actual diagnosis. I lost everything because of my illness including my long time career of 15 years they hated that I was sick with this thing that they couldn’t understand even though my neurologist explained it a million times and certified it. How old are you? I’m 39. I also had an allergist and toxicology test done to see if there is another root cause that be removed in order to help my immune system. Apparently I’m highly allergic to things I ingest everyday or several times a week.

Coffee

Egg yoke

Egg whites

Pepper

Basil

Certain beans

Casin

Dog dander (I have always had dogs)

and so many others on a hypersensitivity 1,2,3, type scale. I just started to eliminate everything that was a high tier. My concern is how will I even know with all the meds I’m on.

[AjaStar in reply to AprilMorris12]

Have u noticed a difference?

[tabbytwo]

sorry to hear your going through it..it happened to me earlier this year...but it seems to be.....that as soon as your 'labelled' with it....neurologists and doctors no longer want to know....no more follow-ups....and discharge you.....they haven't the faintest idea what we are all going through... how we all struggle from 1 day to the next and most of them don't want to know....but there are some out there... who are willing to listen and to help...get a 2nd opinion....I were lucky enough to get 1 by a neuro who is interested in this condition and he referred me to a research group....

Here's a link check it out.. and good luck

med.stanford.edu/psychiatry...

[Yellowfinch]

Hi there, I get all these symptoms and have finally been diagnosed with Vestibular Migraine. You don’t have to get a headache with them. It would be worth looking at. Good luck!

[Hidden]

Could it be Benign Fasciculation Syndrome? Check it out just in case.

Best , G.