My name is Misty. I’m new here. As many of you are I’m in limbo. I don’t know where to start. In august 2012 I had what now they say was a seizure. Moving forward. I have seen 2 neurologists. I will be seeing a third at the end of the month. The second neuro ordered a spine MRI because 4 months previous I had brain scan came out clean. My spine had no lesions however we found out why I wasn’t able to walk. My spine was severely crushed. I was in quadriparesis stage. I already started to paralyze. Trying to get to the point here. I had surgery. In able to walk again THANK God. Not far but an moving. My surgery was March 2013.
Things seemed to be getting better. However over the last 4 months I’m clumsi Having double vision, muscle spasms worst in stomach area. But in legs and forearms, hands as well. Tremors. I also have periods of time when I can’t find words. I stutter. I wet the bed I have low back pain. My (surgery was cervical spine.) I have body jerks, twitching, dizzy spells. Second neuro said he thought it was ms but need more defined evidence I have a form of depression. They decided to do a neurophysiological eval. It came back that I have 7
Impairments. I feel alone and lost. I have the support of my loving husband and another social forum who is like family but I need someone to talk to me. I’m really sad. My life is not the same at all since spine issue. I asked surgeon if my symptoms were of my spine being crushed. He said most not likely. Can someone please help me walk through some of this. Sincerely Mis
Hello Misty and welcome,
I am in limbo too and have seen two neuros who have come up with different theories. Is there is any reason why you had a crushed spine was it an accident ? Issues with spinal cord would cause weakness in legs and arms, spasticity and pins and needles etc. A cervical spine issue would not cause a seizure or dizzy spells. Have you had a lumbar puncture ? This is sometimes used when MS is not clear from MRI alone. I really hope that you get sorted too.
Moyna xxx
Thank you so much for responding. My seizure-episode was Aug 2012. I had an MRI almost a month after. then spine MRI. My spine was crushed for a couple reasons. Car accident, spinal stenosis, possible cause from second generation agent orange. I have reviewed my symptoms with my surgeon. I had surgery. They did a cervical allograft decompression disectomy fusion. Going through the front of my throat. My surgery was a success. My pain that was from spine subsided.
My spine is no longer crushed. Pins and needles and spasms he said are MOST LIKELY not the cause its been almost a year since surgery. My spine had to take priority obviously. I have not had follow up with neuro for almost a year. Urinary incontinence can be caused by spinal injury but again surgeon said most likely a neuro issue. Many of these issues subsided until I had another flare up. Stuttering, double vision, wetting the bed, major
Muscle spasms. Not little cramps. You can see when my muscles spasms happen and I sound like a woman in labor - according to mother in-law of having 3 children. She almost passed out. Lol I was leaving the hospital after meeting with surgeon. On our way out it started ended up in ER. Also my Mother has Rheumatoid arthritis along with psoriasis. I know there isn’t a genetic mutation but I’ve bee. Educated with the facts that I’m more susceptible
To getting an auto immune. I also have psoriasis. Its manageable but getting worse. Also found out having psoriasis makes you almost 3 times likely to get auto immune disease. I feel like I’m babbling. I don’t mean to. But my life has already changed drastically in my abilities and permanent damage from spine being crushed. I’m fighting really hard not to feel useless. The fatigue I have is not from over doing anything… lol And I have depression and know that “kind” of tired.
The kind of tired I get now is sudden. I can feel refreshed after waking and in a few hours later I’m so tired no matter what, I have to lay down. After doing the neurophysc evaluation with all of my impairments and symptoms they want me to go to Mayo clinic. But its a waiting process. So I will see this new neuro who is supposed to be wonderful. I’m sure I will get more MRIs and most likely a spinal tap. Have you had one? After my spine surgery you’d think I wouldn’t be scared of pain but am very nervous.
I know in my heart as my two other doctors have said there’s no doubt there is a neuro disease. But I just want to get a grasp on it and move forward. . I feel sometimes I’m frozen in time. Somebody please melt me lol sincerely, Mis xxx
Hello Misty
Can I just ask you Misty. I too started out with the skin condition Psoriasis in my thirties…I’m now 57. In 2007 I was diagnosed with Psoriatic arthritis. It is Rheumatoid arthritis that your mother is diagnosed with?
Have you been tested for RA?
I’ve had a lumbar puncture Misty and had no problems. The staff kept me laying flat for two hours afterwards then I was allowed home. Rest as much as you can for a few days…caffeine drinks are supposed to help avoid headaches.
Its a stressfull time waiting for a diagnosis Misty, I hope your getting plenty of support from your family. These things can take a while, so keep coming on here and chatting won’t you.
What is Agent Orange…herbicide?
All the best to you Misty, take care
Good Morning 
I hope this finds you feeling OK. As far as your question. Yes My mother has rheumitiod arthritis. However her blood markers have never shown it. In fact they diagnosed, undiagnosed and then diagnosed her again. I also was tested and it came back negative. My symptoms do not fit with what RA. I’m from the U.S I prefer to talk to people from the UK. As that’s where my bloodline stems from mostly. I am typing from phone so I apologize if this comes out messy lol. My father was a Marine sniper during the Vietnam war. TheUS sprayed Agent orange.
They sprayed agent orange and it was tainted so children of vets are affected as well. It will go to 3rd generation. This is really so difficult. I’m in pain already and feeling like I was being hit with my spine issue and possible MS at once. I take showers and by the time I’m done I’m in so much pain. My muscles are so weak. And I just woke up again with the bed wet. 
Thank you so much for responding. So how long have you had MS? I’m so sorry your suffering. I’m married 3 1/2 yes I’ve been sick for over 2. It’s early here I need to lay back down. Please respond. I need somebody to talk to. Thank you for your time! Big hugs to you!
Hello misty
I was diagnosed with MS last August…I was referred to neurologist with chronic headaches and migraines.
Thinking about things now, a lot of my symptoms over the years may have related to the ms but I just assumed it was all down to the Psoriatic arthritis PSa.
That must have been quite a bad car accident…what a horrible time you’ve had. How is your mobility now misty?
Do you feel the agent orange as something to do with your neurological problems? It wouldn’t surprise me!!
Do you have relatives in the uk misty?
Take care, Noreen
PS: Feel free to private message me anytime xxx
Its nearly one in the morning…I’ll be off to bed soon
Hi Blossom, Hoping your on here however I know it’s late there. I don’t think agent orange plays a role in neuro problems. However there is a forum for children of vets listing all the illness that 2nd generation have been struck with. I’m having an episode/flare-up today so my thinking is not clear.
Blossom, I brought up agent orange because ms is listed in the forum. But my mothers side is the one with the auto immunes. I have had tumors removed and other problems they believe to be related. Moving forward I want to say I’m terribly sorry that you and everyone on here is sick. Regarding my mobility I can walk again. It is not far but I’m blessed to move at all. I try not to get to upset but life has changed and I have yet to really accept it. I was doing really well. Like I said I had the surgery I started to feel so much better. But all the sudden in Oct. I started having these “episodes” again.
This last week again I wet the bed, dizzy, slow and then it stopped. Then I woke this morning ( I’m having to wear diapers to bed) it happend again followed by double vision and not steady on my feet. I’ve been married to a wonderful man over 3 years and I tell ya, we have been going through so much. My husband has to have 8 teeth pulled. His top has line is not good. So he has been staying home because I still can’t do a lot and after finding out that I have 7 impairments neurologically he is afraid to leave. Especially after having seizures.
Now we are going tomorrow and meeting with the surgeon for his consultation. UGH… he will be getting a partial upper plate. But he has to wait 8 weeks or so till his gums heal to get his plate. Then on the 31st I will be seeing the new neuro. We moved states to help his grandmother and we are here alone. His family has taken over with his grandma and I don’t have family on my side. I’m so overwhelmed that I get frozen with sadness, stress and frustration. After my seizures I started getting migraines. So they put me on tramadol. I’m on baclofen for muscle spasms but with the extreme temps its really painful.
Blossom, Your other question do I have family there. No I do not. I have two friends there though. Also from what I’ve read its more common for people of English decent such as Scottish, Irish and welsh are more prone for ms. Aside being partially native american I’m primarily of English decent. Enough about me. How about you?
Blossom, As far as your diagnosis for ms was it out of the blue or did you expect the bad news? Did they find lesions and was the spinal fluid positive for what needs to be for diagnosis? Your psoratic arthritis what does this mean? Are you getting relief with medicine? Another question… what do you take for your ms? That part I haven’t read about because I’m afraid of that. Lol How are you handling the meds they prescribe you?