Multiple Sclerosis

[Mommyof1ForLife]

Here's the skinny: I am a 35 yr. Female and was diagnosed with Ulcerative Colitis about 6 months ago. Everyone in my immediate family has an auto-immune disease, and now me.

After going into remission of the UC about 4 months ago, I started getting tired every day ( I have been a bodybuilder/high intense cardio person for 12yrs) and would have to lay down for an hour or two and sleep ( not like me) and as the weeks went on each week I grew more and more tired every day and would drink caffiene energy drinks to get thru the day. They didn't help. Each week progressed and I started skipping workouts due to muscle weakness and extreme fatigue ( like the flu/which I never get) and I was laying down for more of the day.

About 6-7 weeks ago, My mom had to start coming over several times a week to help me with my 2yr. old daughter because I just couldn't get off the couch....everything was an effort.
If I laid aroud for 2 days, then I would have a day where I could clean house or do a work out(not what I usually do) and found myself really struggling to finish it. I felt like I was dying the whole time, weak, and so very tired.

Then I woke up and my vision was weird, dream like/distorted ( like you couldn't tell how far things were). I started having several severe bouts of vertigo and motion sickness every day sometimes all day and couldn't look at anything that moved. I had nausea during these times. Then came the 2 episodes of body numbness and tingling for a few minutes, felt like I was going to collapse or near syncope, I was sitting and stayed very still till it passed ( a few minutes) and after it passed, I felt extremely weak all over and my thinking was confused and had slurred speech, and could find the words I needed to get out..total time of that lasted for 1.5 hours or so.

I get confused off and on and have a hard time finding the words i need when I feel tired or have been somewhat active.
I went to the ER after the 2nd episode and they admitted me and ran every blood test, cardio, artery, CT, chest x-ray, MRI scan and everything came back fine.
Upon release, I was waiting to go home and was still having the vision distortion ( had been having it 24/7 for 2 weeks) and every time I'd try to leave my room I got anxious and confused. Like I couldn't figure out where to go or how I would get back to my room... my thinking took more effort and well, I just was confused.
They sent me home, told me to follow up with an ENT (ear,nose,throat for the vertigo) and an Endocrine doc, and my neurologist whom I just met in there.

I left and went to breakfast still feeling a little unclear and had started getting a severe case of vertigo and got that same body sensation as before for a few minutes..but no affected speech this time.

THe following week I was the same. Going from doc to doc, for more blood more tests. They said I was an enigma. Thanks. My Primary care said maybe I was psychsamatic and depressed...I said, uh, no.

So the next week, I was laying around even more and probably had one good day and would try to get back some normalcy, and then I'd be down for 2 days , weak and tired.
About 7 days ago I started having more muscle weakness that increases as I use them or as the day wears on (typical lately) but even more than before and felt different. I don't have the visual distortion anymore or the daily bouts of vertigo I do have 24/7 sever nausea, i'm urinating 2-3x's as much and get insomnia every night ( not like me). I also started to have breathing diff. I feel like a weight is on my chest some days and even when that is not present, it's hard for me to talk too much, sing lullaby's, or even walking around the house puts me out of breath.

THis past Sunday was terrifying for me...it was my daughter's 2nd B-day party at a park and I was feeling the same, tired, winded etc. So, I sat for most of it to conserve energy. I got up and walked maybe 12 feet and was standing for a few min. talking to my sister ( a nurse at Children's Hosp) and all of a sudden I couldn't feel my body or the weight of it and reached for my sister and she drug me to the picnic table to sit me down and I started having the slurred speech and started to fall forward so she laid me down on the bench and my arms and legs kept falling off of the bench. I couldn't move any of my limbs, but I could feel people touching me. My muscles were like puddy. I then started getting tingling in my hands and feet like they were falling asleep and the ambulance came and when I got to the ER they were full. THey tried to get data from me and it was hard to speak and think.
I was triaged after 45min of waiting and crying ( scared) and when they asked me to move or to sqeeze Doctor's fingers, I could close my fingers around him ( took effort) but couldn't sqeeze.

They ran blood work and took Arterial Blood as well. NOthing! I finally saw an ER doctor for the primary evaluation ( he has seen me 3x's in the last 6 weeks) some 6 hours after the start of this episode....SO by the time he saw me, I was able to sit, move limbs, talk and even walk slowly!! I was very weak, like i had been bed ridden for days, but they sent me home to see the Neuro again.

I saw him 2 days later 10-28-08( meanwhile during this wait, I was having trouble walking..weak, my legs would buckle constantly when I would walk), He ran the baxic look at my finger move, test reflexes, and sqeeze my finger test, said he couldn't find anything and I insisted he test me for Myasthienia Gravis ( the antibodies) since he wouldn't do an EMG. He told me that maybe I was depressed, or stressed and I said, yeah I am alittle NOW.!!!

He said my symptoms don't point to any one disease, and esp. not Myasthenia Gravis Today, 10-30-08
I was waiting for my mom to take me to have my eyes checked and to see a psychlgst (to rule out what the doctor's seem to keep throwing at me and they both say I'm fine! ) And left leg started to feel like it was falling asleep and my toes were tingling...this lasted for 1.5hrs. Then it cleared up and 30min later, both feet felt that way and my toes were tingling and I was having trouble with my balance and walking and my legs felt very weak and fatigued. This lasted 2.5 hours and I got home and laid down and slept for 2 hours.

I feel crazy! No one can find ANYTHING....I'm going to go for a second opinion, I think. I am going to try the Washington Univ. School of Med in St.Louis (45 miles away)
Every week is getting worse and more symptoms are rising and I just never know what to expect each day and I am scared to go anywhere now.
SOrry so long............Does any one here have any idea if I fit the MS profile...I seem to be progressing at a fast rate with something :( DO you think a spinal MRI would help? ANd I read that sometimes it takes 3 months for lesions to show up?
THank YOu
Tina

[Mommyof1ForLife]

I forgot to mention that I have had mornings a lot lately and in the middle of the night when I have to urinate, I am clumbsy and wobble/stumble for a minute ...and a lot of mornings the soles of my feet feel bruised and hurt to walk. Then it goes away and sometimes comes in the evenings but only if I am walking, otherwise I don't feel the tenderness or pain...I 've had 2 swallowing episodes few weeks ago each a week a part and 1 episode where I woke up gasping for a minute...these have NEVER happened to me in my life, until now.

[gottfreund]

Mommy for Life,

Hello. I've never posted before, but I had to reply to your post. I am a 31 y/o man. I recently moved from the St. Louis area after living there for a year. I too have a 2 1/2 year old daughter. I too was considered very healthy prior ot this problem. On 8/8/08, I began having symptoms out of the clear blue sky VERY similar to what you described.

My symptoms began during the move from St. Louis to Alexandria, VA. I was sitting at a Taco Bell along the highway when, wham, serious vertigo, spinning visuals and intense nausea. These symptoms continued for a couple of days when tingling around my head was added along with intense sensitivity to light, sound, and eating. After a week or two, the dizziness went away and nausea subsided, but the visual problems became like halos and other distortions. From that point on, I have maintained these symptoms to varying degrees of severity and have added, at times, an unreal feeling, sudden inability to breathe, chest pains, palpitations, intense nausea, tinnitus, tingling in the hands and feet, and my most recent symptoms, terrible neck pain, a numb feeling even though I can feel my limbs when I touch them, and some coordination issues. I have had ER visits and big scares, but have not had anything as serious as not feeling my body like you described though. I'm sorry you had to go through that.

My doctors too have no idea... all tests have been negative like yours. One neuro I've seen says MS, no way. Another says possible MS, but is testing for everything else under the sun, so doesn't seem convinced. Here are some keys to MS that have helped me to feel a little better that maybe I don't have it (maybe they will help you too): visual symptoms of MS are almost always in one eye only and involve double vision, blurring, or dimming (not distortion); most MS patients are worse in warmer weather (not I); it is possible to have a clear MRI and have MS, but highly unlikely (I want to get a second MRI, a 3 Tesla MRI this time, done some time down the line to put a nail in the coffin on the MS diagnosis).

So, next question is, what is this problem? My theory is that I have a core disease (visual distortion, tingling) maybe MS (probably not), maybe Lyme (or another insect-borne illness) that has not shown up in blood tests, or something else, and that my extreme anxiety from having the core disease is causing the diffuse symptoms that are MS-like (heart issues, breathing problems, increase in urinary necessity, neck pain, numbness).

I am scared by this too, especially with my daughter and all, but think I can beat it. I will share anything I learn about my disease and pray that you do the same. Given the timing, geography, and circumstances of our problems, there may be a link (insect-borne perhaps).

My very best to you and I hope to hear from you.

[ralph pelkey]

yes it does sound like you have ms.but dont plan on finding a good nerog they have all told me i was mental.makes you want to slap them.i was a truck driver until i started having memory trouble and vision problems.i have gotton lost trying to get home from work,and not being able to express my self.Iwent from making 105.000 dollors a year down to being on welfair,o the pain and weakness i have been in bed for a month and getting worse they tell me a spinal tap is the best test to do but a friend of mine had it done and now she has no movement from the wast down .i hope you have the heart to do it,not me.I wish you all the luck in the world i will keep you in my thoughts and prayers GOD bless you R PELKEY MULVANE KS