1. < Brain & Nervous System

undiagnosed movement disorder

Posted by beth11 @beth11, Dec 25, 2019

I am new to this discussion forum. I have been seeking a diagnosis for over a year and a half and am open to any and all suggestions. I was hospitalized in 2018 and misdiagnosed with a seizure disorder. After year of failing to improve or confirm seizures via eeg and video eeg I was referred to a movement neurologist. I have abnormal muscle movements which impact my entire body, muscle spasticity in both feet which has become constant, and myoclonus mostly at rest. My toes are completely curled in and cross over each other. All tests have come back normal including brain MRI/CT, EMG, and upper spinal MRI. I am scheduled for a lumbar MRI which if it comes back normal my neurologist has suggested I seek treatment at either the Cleveland clinic or Mayo clinic. If anyone has similar experiences please share any advice. I am taking baclofen and neurontin without any improvement. I can no longer drive and am not working.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

beth11 | @beth11 | Jan 18, 2020
In reply to @sadnancy "The new drug, Austedo, seems to be helping. I call it my miracle pill. The rib..." + (show)
@sadnancy

The new drug, Austedo, seems to be helping. I call it my miracle pill. The rib area spasms occur briefly just a few times a day and I have less breathing issues. I'm having new symptoms which I'm guessing are side effects of the drug: swollen feet and legs up to my calves, constipation, weight gain. I wonder what the breaking point is - when the side effects are worse than the reason for taking the drug. I suppose the doctor will help make the decision. I'm tapering up more each week. Started at 6 mg twice a day and now I'm up to 12 mg twice a day.

Jump to this post

Have you talked to your dr. about the swelling?

REPLY
1 reply
sadnancy | @sadnancy | Jan 18, 2020
In reply to @beth11 "Have you talked to your dr. about the swelling?" + (show)
@beth11

Have you talked to your dr. about the swelling?

Jump to this post

I plan to call doctor on Monday. Thanks for the nudge. I'll let you know what I find out.

REPLY
Robin | @birdierobin | Jan 19, 2020

Hello. I too am new. I can barely walk or turn around, have fallen quite a few times. My speech is now affected and I have Urinary Inconsistency. Drs have been all over me for 5 years. MRI’s, CT scans, Brain Scans, just to name a few. They have been suspicious of MS, bone misalignment, Parkinson, Progressive Supra Nuclear Palatka, Multiple System Atrophy. All scary stuff. I am currently waiting on a Spring appt with Minnesota’s Mayo Clinic. A friend just introduced NPH, Normal Pressure Hydrocephalus to me and I fit the symptoms 100%. This gave me some hope again. Anyone familiar?

REPLY
1 reply
Robin | @birdierobin | Jan 19, 2020
In reply to @swift "It's hardest thing not understanding why your going through this difficult time, being in limbo we..." + (show)
@swift

It's hardest thing not understanding why your going through this difficult time, being in limbo we sometimes say, tis stressful and hard to deal with, not knowing is half the battle somewhat overwhelmed by things around you especially if the doctors can't understand why your body has reacted in some way, this is just stab in the dark , do you or have you had mercury fillings in your teeth ?! I've had similar thing happened to me something makes my body move without my saying or doing when I walk can't stand up or wobbling like I've been drinking when I am almost tea total ( so we say in England) doctors can't understand and because they are not able to understand sometimes they don't want to see you anymore. It's definitely frustrating.i don't know whether you have any other illnesses autoimmune diseases or family members had , but might be worth ask doctor what you think, triggers this off, where /when did this start for you ?! I've found chillies turmeric ginger root dandelion root all helps and especially taking sugar out of my lifestyle changes. Hope this gives you some peace of mind just knowing that your not alone can sometimes help. try to look for things that bring you joy , birds , horses mountain sea view ... Keep a journal helps too ... Kind regards swift hug from England

Jump to this post

I understand your frustration a lot. Hang in there! Its a long journey......

REPLY
1 reply
beth11 | @beth11 | Jan 19, 2020
In reply to @birdierobin "Hello. I too am new. I can barely walk or turn around, have fallen quite a..." + (show)
@birdierobin

Hello. I too am new. I can barely walk or turn around, have fallen quite a few times. My speech is now affected and I have Urinary Inconsistency. Drs have been all over me for 5 years. MRI’s, CT scans, Brain Scans, just to name a few. They have been suspicious of MS, bone misalignment, Parkinson, Progressive Supra Nuclear Palatka, Multiple System Atrophy. All scary stuff. I am currently waiting on a Spring appt with Minnesota’s Mayo Clinic. A friend just introduced NPH, Normal Pressure Hydrocephalus to me and I fit the symptoms 100%. This gave me some hope again. Anyone familiar?

Jump to this post

Hi @birdierobin I'm currently waiting for word from Cleveland clinic regarding an appointment with a neuromuscular specialist. My current dr. has been diligent but unable to pinpoint a cause for my symptoms. And the baclofen only helps marginally regarding the muscle spasticity. I'm beginning to have pain in my feet and ankles due to the contraction of my toes and arching feet. Are you on medications for Parkinson's?

REPLY
1 reply
ajp2019 | @ajp2019 | Jan 19, 2020

Normal Pressure Hydrocephalus | Patricia's Story
Johns Hopkins Medicine
After 18 frustrating months of going undiagnosed for balance and memory problems and bladder issues, Delaware resident Patricia finally learned she had normal pressure hydrocephalus from neurologist Abhay Moghekar from the Johns Hopkins Cerebral Fluid Center.
Hear about her new appreciation for life following her shunt surgery and rehabilitation.
Visit us: http://www.hopkinsmedicine.org/neurology

REPLY
1 reply
barbbie | @barbbie | Jan 20, 2020

Wow! Your symptoms come closest to mine as I have ever read. In a span of 7 years I had 3 concussions with the last leaving me without a memory of falling, knocked out for about 5 minutes, postconcussion headaches, followed by a body wide increase in muscle contractions that started after my 2nd concussion, and then essential myoclonus. This has been going on since 1999. I take klonopin for the myoclonus. My muscles are tight but when I have an episode, generally started by someone touching or injecting around my right shoulder area, contortion is a good word for a description of the visual. Just had a bout at pain management that lasted over an hour. Time is all that helps resolve it as I am allergic to so many meds. I have been told they are all in my head and I am anxious. I deny either, well I 'm pretty sure the head injuries are responsible but that's not what they mean when they say all in my head. I find both myoclonus and sustained contractures exhausting and moderately painful compared to my other pain issues.

REPLY
2 replies
aarniek | @aarniek | Jan 20, 2020

I think we do suffer some similar symptoms and the one that no one else ever had is the total loss of long term memory! Mine came on after I had been in protracted withdrawal for 4 years ,so strange and it’s devastated me as not only does it take away my past,it tells me something happened to cause it and my neurologist is a waste of time as he has no answers plus he did 2 MRI’s ! Any info you can provide could help greatly. Head pressure and muscle tension of shoulder and back plus tinnitus round out my issues. Thanks for getting back to me and hope we can help each other!

REPLY
1 reply
Leonard | @jakedduck1 | Jan 20, 2020

@aarniek
Hello,
I’m sad to say I know what your going through.
Did you lose your memory slowly or was it there one day and gone the next?
Jake

REPLY
1 reply
Robin | @birdierobin | Jan 22, 2020
In reply to @jakedduck1 "@aarniek Hello, I’m sad to say I know what your going through. Did you lose your..." + (show)
@jakedduck1

@aarniek
Hello,
I’m sad to say I know what your going through.
Did you lose your memory slowly or was it there one day and gone the next?
Jake

Jump to this post

I just started noticing I remember nothing, even when the person goes into grave detail. Nothing ‘jars’ it.

>

REPLY
View MoreView Less
Please sign in or register to post a reply.