Spasticity and losing hope
 

Hey i am new to this and would really appreciate any insight... I currently have asthma , graves disease , and reflux. One year ago i began having problems climbing stairs - my legs would be too weak as i got near the top and i would swing my hips to complete the climb. My endo tested thyroid and all ok, but ana was 1:320 speckled & homogenous. I was sent to rheumy (lupus ?), once again positive ana but normal crp,esr,..second rheumy visit with another doctor but nothing again. Lumbar spine mri showed degeneration but no compressions accounting for leg weakness. By the time i was seen by neuro , my legs were constantly tight and i could not walk inclines of any sort, some days i could not walk level ground without swinging hips. Neuro tested me for myasthenia gravis and b12. Testing all ok. I asked for thoracic mri due to numb area between shoulders. Mri showed cystic areas in mediastinum but spine ok. Nct and emg ok. I asked for mri head and neck, neuro dismissed idea. Pcp did mri of head and neck , both ok. Second neuro doc -2 mos later -has sent me to physical therapy where therapist states my legs are spastic and right leg rigid. Also, arms show weakness and tightness at inner elbows. Stretching exercises being done. Evoked potential 1 week ago negative but my back was too tight-per technician- so she bypassed that area and picked up testing at cervical area ? Currently my uvula is leaning toward the right, my vocal cords do not fully close (hoarse all the time) - per ent and laryngo scope - and food is not moving through esophagus thoroughly-per ent and barium study. Two weeks ago my eyes hurt, and my eyelids drooped for about one week . I had difficulty keeping my eyes open in the light. Where do i go from here ? Is ms completely ruled out ? Thanks for any help.

hello and maybe an idea
 

:Scratch-Head::hug:Dear K, I am so sorry you are having such a hard time. I can tell just by all the tests you have had done, that you have been put through the wringer, and it isn't fun. Welcome to this site, and I do believe there will be many others that will respond to you.
I have been told by members to break your paragraphs down just a bit to help with reading your results. I did just what you did, in a long letter.

this is also a place where there is alot of hope. My opinion is never to give up on seeking the reasons for your symptoms. Having trouble walking is serious. After you hear from others on your tests, consider Mayo Clinic. As far as diaganosis is concerned, they seem to get to the bottom of things and both clinics are noted for diagnosic ability. I hope you get resolution in your new year.

Nice meeting you!!
 

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here to assist you. Our shouders are here for support in many ways. My thoughts and prayers are with you.

Check out the following forums:

http://neurotalk.psychcentral.com/forum77.html

http://neurotalk.psychcentral.com/forum105.html

Again welcome, looking forward to seeing you around.

Darlene :hug:

ginnie, thanks for your response.

KYMMER,

You're certainly going through a lot right now, and I know what if feels like to not have answers, and thus, no options, really.

I have a spinal cord injury from a bleed from an AVM in my spinal cord (where I also have an aneurysm that hasn't bled). It took four years for me to be correctly diagnosed, although I didn't realize all that time that the DX I had been given wasn't correct.

Anyway, I have a lot of spasticity in both of my legs and my abdomen. I know a lot of people are able to control the spasticity with Baclofen, although I wasn't able to tolerate it. I take Tizanidine at night to keep the spasticity down enough to let me get some sleep. Generally I can deal with the spasticity during the day, but sometimes I have to take the Tizanidine during the day too. It's prescribed for round the clock, but I try not to have to take it during the day because it makes me drowsy to the point of keeping me from driving.

I know this information does absolutely nothing to help figure out what's going on with you. But I wanted to mention the fact that there are drugs that can help with the spasticity.

I realize you may or may not want to treat any of your symptoms before being diagnosed, and perhaps your doctors haven't mentioned treating the spasticity, for any number of reasons. But if you need some help with that it may be something you'd want to talk with them about.

If my spasticity hits while I'm standing up or walking, it can land me on the ground, or while sitting can suddenly throw a knee up into the bottom of the desk or table. And then let's not even talk about the looks I get from people when I'm in public and it hits. Sometimes I want to say, 'No, I'm not drunk, thankyouverymuch!'. lol.

I hope your docs will get this figured out for you soon so you can get on with the business of knowing what can be done about it.

Wishing you all the best, and if I can help in any way, please let me know.

Thanks for your reply. My sister had an avm in her brain and had it removed 3 yrs ago - she had multiple embolizations prior to her surgery. Your spasticity sounds like it occurs in spasms. My spasticity is a constant leg tightness causing a constant struggle to walk, and a struggle to appear as if i am walking normal . Yeah, no doctor has mentioned medication for the spasticity. The new neuro is currently looking at all of the mri films and i am hoping for an answer. Physical therapy helps somewhat but has to be a daily regimen. Amazingly though, the therapist gave me more insight into my condition than any md. I wish you the best and thanks for the support.