MS ,Movement Disorder,-Parkinsons

[btfldisaster]

I am 38 years old and will give some background as I have spent days and hours reading through the posts and questions in this forum which have given me the courage to tell my story:  On March 4 2012 I woke up to get ready for work and put my feet on the ground and fell, my husband of course helped me up and got me to the couch, he asked me what was going on and I stumbled with my speech to tell him I could not feel my right leg and my vision was like tunnel vision, I asked him to make me a cup of coffee thinking I was overtired and he handed it to me and I dropped it I could not grasp the cup he woke my eldest son up and had him give me two aspirin to chew and they carried me to the truck - we got to the er and they rushed me to a room, i could not explain what I was feeling outside of the fact that I could not feel my right leg and my right arm felt like it was asleep, my head was hurting, sound and light could not be tolerated, and I was smelling things like garlic, I was extremely nauseated, the ER dr examined me for weakness and reflex and the decision was made to air lift me to grady memorial hospital for possible stroke   i was there overnight until the doctors came back to report that thankfully I had not had a stroke at all but they were doing an MRI of my brain with contrast because of some abnormalities seen in the CT scan....later that afternoon a physical therapist worked with me and then an occupational therapist it was at this time that I realized that something was very wrong I could not write or brush my teeth, I could not walk without the use of a walker and although I was thrilled to have not had a stroke I was terrified of what could possibly be wrong with me....the dr's came in again to ask me a million questions I was confused and overwhelmed and do not feel that I was given time to explain that I had been experiencing "weird" symptoms for years that my GP attributed to stress/anxiety and a busy lifestyle.  I was told that I had two hyperintense areas that looked like arachnoid cysts that were normal and in their opinion not large enough to cause my problems. ..I began to develop a rash on my neck and face so they gave me benadryl since it could be from the CT dye and sent me home....I woke up the next morning with my face so swollen and brilliant red that  I thought I had gone blind, again we rushed to the ER....the ER Dr was concerned about me not responding to the med for allergic reaction to the CT dye and that I could not walk and had developed  a bobbing of my head, and what she called seizure like tremors that the hospitalist was brought in and she admitted me and began treating me with solu medrol.  It was at this time that the hospitalist came to my room and told me I needed to see a neurologist - she felt that I may have MS or some similar autoimmune disease possibly Lupus and we discussed my strong family history of neurological problems   so I went home and found a neurologist I went to Macon Neurology with all of my pictures and records and had another neuro exam and he said I believe you have MS but primarily of the spine  - lets do a lumbar puncture - ..I had one band slightly eleveated protein, but nothing else notable, he said that I did not meet the criteria for MS.....4 days later I got a letter that they suggested I get a second opinion and that I should go to the Mayo Clinic.....when I went to my GP he was shocked to see my condition as he had not seen me since 2009 ....He did an exam and said I needed to see another neurogoist....I decided to go to the MS center of Atlanta....again another neuro exam - told the problem was in the spine and a full spinal MRI was ordered with and without contrast, before the appt ...I woke up and fell again and lost all strength in my right side - I was admitted and treated for 3 days with solu medrol, a....the MRI's were performed also need to note that of course all the common mimics of MS were tested for by blood and were negative.  now come the results at the ms center....a dark abnormality in the C spine and the lower spine that the radiologist said looked like a synovial cyst, same probable arachnoid cysts in brain  the Ms Dr siad the problem was in my spine was a movement disorder but  the dr told me that MS lesions are not dark they light up and therefore I did not have MS.   I have had two more occasions in which I completly lost my ability to walk and could not control my urine, but suggestive of parkinsons I now have a resting tremor in both the  right and left hand, my last hospital admission they said they observed seizure like activity during my sleep which was kicking my legs sitting up, trying to get out of bed, tapping my wrist and talking to my children.  this is not seizure activity according to my GP - but it continues, every night when I can sleep I "act out" as my husband describes  it... I wemt to emory university on December 1, since early november I have severe right hip pain upon waking and leg pain like I have been running a marathon, I now fall asleep throughout the day riding in the car, sitting at the kitchen table etc for short periods of time and then argue with my family about it...it is very weir for all of us....my hands shake so much I cannot put on a bra, button a button, tie my shoes, hold a fork - well I just spill everything, I have not driven in six months because I failed a peripheral vision test, so at Emory the checked my blood and my abdomen as It was causing extreme pain I though appendix...however it was from severe constipation...the Dr. who was taking care of me noticed somthing about my eyes and then did a short neuro exam, and then called the neuro on call keeping in mind this was a sat night and a very busy hospital ...however the neuro did another more intense neuro exam and again  got to the reflex part, the balance, the walking, and walking a straight line and said that he wanted me to see the MS specialist there even though he doesnot think MS but does think Movement disorder and there are several and possibly early onset parkinsons.....but he had to point out that without insurance I would have to pay up front for the visit...we said we did not care about the cost my husband s words were money I have, but I cannot let her keep deteriorating without knowing why or possibly finding something that can stop this or make her better....he told that dr somthing that I had not yet heard him say.....Before all this started my wife worked fulll time she was two months away from her dream of finishing her bachelors degree, he said sir my wife has given eveything she has ever wanted or had to raising our children, taking care of me, and I almost thought I was losing her when she was in that helicoptor ....can you please refer us to a Doctor who can give her back to us

[sllowe]

Hi there,

Welcome to the forum. I am so sorry for what you are going through you must be at your wits end.

Much of what you are dealing with, and what you have gone through many of us can relate to. You were a busy person, Mom, Wife, with a lot going on, and then your entire world was shook up, thrown up into the air, and upon landing you are still not functioning properly, it takes all you have to do the smallest things, and you want this fixed, and you want it fixed now! Sound familiar?

I am so, so very sorry. So much of what you described hits home with me. So very hard to get through the days and the minutes like this. So, I'm very glad you found us :) We understand!

In your particular situation, I do believe you are going to have to get a third party from a well known center to get to the bottom of what is going on in your spine.

It's affecting your ability to walk, use the bathroom, and other things. And, it does not sound as if they are convinced it's a "classic" MS lesion. That said, whose care are you under now? So, we can help you with some next steps?

Please know in your heart that if this is MS you can see improvement, even though it seems like it could never happen from what you've been dealing with for months.

Your fine motor skills sound off - that's why you cannot put on the bra. You are experiencing fatigue, that's why it's worse than being "tired"
Your having problems with you hips and pain quite possibly caused from secondary problems directly related to not being able to move around like you did 6 months ago. These are all my opinions from what you describe.

I hope you can save the $ and get to a 3rd party specialist and get to the bottom of this once and for all. At least identify what they are seeing in the spine.

Thank you for joining us, and hope we can help.
-Shell

[Karen99]

Hi. Your story is a difficult one and I appreciate the courage it took to tell your story.  I've re-posted it for you in smaller paragraphs. Many of us have difficulty reading large blocks of type.

More people will be able to read it now and be able to respond. Hope you don't mind :-0

"I am 38 years old and will give some background as I have spent days and hours reading through the posts and questions in this forum which have given me the courage to tell my story:

On March 4 2012 I woke up to get ready for work and put my feet on the ground and fell, my husband of course helped me up and got me to the couch, he asked me what was going on and I stumbled with my speech to tell him I could not feel my right leg and my vision was like tunnel vision, I asked him to make me a cup of coffee thinking I was overtired and he handed it to me and I dropped it I could not grasp the cup he woke my eldest son up and had him give me two aspirin to chew and they carried me to the truck

we got to the er and they rushed me to a room, i could not explain what I was feeling outside of the fact that I could not feel my right leg and my right arm felt like it was asleep, my head was hurting, sound and light could not be tolerated, and I was smelling things like garlic, I was extremely nauseated, the ER dr examined me for weakness and reflex and the decision was made to air lift me to grady memorial hospital for possible stroke   i was there overnight until the doctors came back to report that thankfully I had not had a stroke at all but they were doing an MRI of my brain with contrast because of some abnormalities seen in the CT scan

later that afternoon a physical therapist worked with me and then an occupational therapist it was at this time that I realized that something was very wrong I could not write or brush my teeth, I could not walk without the use of a walker and although I was thrilled to have not had a stroke I was terrified of what could possibly be wrong with me....the dr's came in again to ask me a million questions I was confused and overwhelmed and do not feel that I was given time to explain that I had been experiencing "weird" symptoms for years that my GP attributed to stress/anxiety and a busy lifestyle.

I was told that I had two hyperintense areas that looked like arachnoid cysts that were normal and in their opinion not large enough to cause my problems. ..I began to develop a rash on my neck and face so they gave me benadryl since it could be from the CT dye and sent me home....I woke up the next morning with my face so swollen and brilliant red that  I thought I had gone blind, again we rushed to the ER....the ER Dr was concerned about me not responding to the med for allergic reaction to the CT dye and that I could not walk and had developed  a bobbing of my head, and what she called seizure like tremors that the hospitalist was brought in and she admitted me and began treating me with solu medrol.

It was at this time that the hospitalist came to my room and told me I needed to see a neurologist - she felt that I may have MS or some similar autoimmune disease possibly Lupus and we discussed my strong family history of neurological problems   so I went home and found a neurologist I went to Macon Neurology with all of my pictures and records and had another neuro exam and he said I believe you have MS but primarily of the spine  - lets do a lumbar puncture

I had one band slightly eleveated protein, but nothing else notable, he said that I did not meet the criteria for MS.....4 days later I got a letter that they suggested I get a second opinion and that I should go to the Mayo Clinic.....when I went to my GP he was shocked to see my condition as he had not seen me since 2009 ....He did an exam and said I needed to see another neurogoist...

I decided to go to the MS center of Atlanta....again another neuro exam - told the problem was in the spine and a full spinal MRI was ordered with and without contrast, before the appt ...I woke up and fell again and lost all strength in my right side - I was admitted and treated for 3 days with solu medrol, a....the MRI's were performed also need to note that of course all the common mimics of MS were tested for by blood and were negative.  now come the results at the ms center....a dark abnormality in the C spine and the lower spine that the radiologist said looked like a synovial cyst, same probable arachnoid cysts in brain

the Ms Dr siad the problem was in my spine was a movement disorder but  the dr told me that MS lesions are not dark they light up and therefore I did not have MS.

I have had two more occasions in which I completly lost my ability to walk and could not control my urine, but suggestive of parkinsons I now have a resting tremor in both the  right and left hand, my last hospital admission they said they observed seizure like activity during my sleep which was kicking my legs sitting up, trying to get out of bed, tapping my wrist and talking to my children.  this is not seizure activity according to my GP - but it continues, every night when I can sleep I "act out" as my husband describes  it

I wemt to emory university on December 1, since early november I have severe right hip pain upon waking and leg pain like I have been running a marathon, I now fall asleep throughout the day riding in the car, sitting at the kitchen table etc for short periods of time and then argue with my family about it...it is very weir for all of us....my hands shake so much I cannot put on a bra, button a button, tie my shoes, hold a fork - well I just spill everything, I have not driven in six months because I failed a peripheral vision test,

so at Emory the checked my blood and my abdomen as It was causing extreme pain I though appendix...however it was from severe constipation...the Dr. who was taking care of me noticed somthing about my eyes and then did a short neuro exam, and then called the neuro on call keeping in mind this was a sat night and a very busy hospital ...however the neuro did another more intense neuro exam and again  got to the reflex part, the balance, the walking, and walking a straight line and said that he wanted me to see the MS specialist there even though he doesnot think MS but does think Movement disorder and there are several and possibly early onset parkinsons

but he had to point out that without insurance I would have to pay up front for the visit...we said we did not care about the cost my husband s words were money I have, but I cannot let her keep deteriorating without knowing why or possibly finding something that can stop this or make her better....he told that dr somthing that I had not yet heard him say.....Before all this started my wife worked fulll time she was two months away from her dream of finishing her bachelors degree, he said sir my wife has given eveything she has ever wanted or had to raising our children, taking care of me, and I almost thought I was losing her when she was in that helicoptor ....can you please refer us to a Doctor who can give her back to us."