Category Archives: Personal Experiences

Georgia’s Story




My name is Georgia. I am 40 years old and my diagnosis came to me at almost 37. I haven’t had an easy life, but I was at a point where things for me were looking up. I remember this well, because a week after I had this initial thought things got real rough for my husband and I. One night, as we were reading in bed, I stopped and decided to tell my husband that I was thinking of going to the doctor because I had a pain right above my left breast for a couple of days that was concerning me. After a few days of thinking it wasn’t a big deal my lower back started to hurt, and I felt weak. I called my doctors office, and they couldn’t get me in and referred me to one of the walk in clinics. By the time I called my regular doctor, and drove to the walk in clinic, my neck, my left arm, my right foot, and an acute sensitivity to my skin were bothering me so bad I was pretty scared about what was going on. The doctor at the walk in clinic said he thought I had the shingles with no rash. He gave me pain pills and sent me on my way. I could barely drive home, and I couldn’t touch my back to the seat. The pain didn’t go away and my hands and legs were getting weaker as the days went by. I had to go back to the walk in clinic, but a different doctor said the same thing. Shingles, no rash. By the time I got to see my regular doctor, I could hardly walk. He wanted to hospitalize me right a way. Looking back on it now, I don’t know how I refused him, but my son had been away at school and he was coming home that weekend, so the doctor said he would get me into a neurologist as soon as possible. Now I couldn’t walk without help, I couldn’t drive, the pain was debilitating and this all happened with in 3 weeks, and I suffered this way for 2 years. Things got better, but not great. A year in a half ago I started seeing a rheumatologist, and he put me on mexatrexate and with in 9 weeks I started walking around the house better, I stopped seeing the neurologist because I felt I was just paying him to say hello and how are you doing. Since then Ive been diagnosed with 10 different things, including fibromyalgia, osteoarthritis, and things the doctors don’t agree on, but I can walk a lot more, with a gait, and not very long. Still suffer pain and muscle spasms, confusion, and I couldn’t work if my life depended on it, but I am grateful for the things I can do, like take a shower and dress myself.

Carol’s Story

Hi im Carol; Dx on 3-29-13. A hard working woman of 55 yrs old. Outgoing and enjoying life, working over 128hrs overtime this past winter plowing snow in Michigan. Never sick, just go go go! Winter had ended and working on gralel roads for spring time and stopped my big Co Truck for lunch and had tingeling down my right arm and a sharp pain go across my shoulder blades. Scared i was having a heart attack, i took an asprin, rubbed my arm, shook it and continued back to work for the remaining of my shift. Got home and started supper for my Husband and I, went to get up from my computer after eating around 6pm  and my right leg was now tingeling and my left leg felt heavy, by 7 pm i could not walk, left leg was dragging on the ground. I became very scared and started crawling around on my hands and knees. Around 8pm i decided to try out the hot tub to see if that would help my failing legs. My right leg intered the tub and i thought the tub had gone on the blink again as the water felt cold to me, so I put my left leg in and i could feel the nice Hot Water!!!  Humm, somethings Not Right!!! I went to bed and decided to go into the ER the next morning if things diden’t change—They Did Not!

 

Off to the local Hospital ER, Blood work, X-rays and an IV (just in case). The ER Dr. said he diden’t know what was wrong so ordered an ambulance to transport me to Grand Rapids Spectrum Hospital that has an MRI machine.


I was in the Hospital for 3 days and 3 MRI’s and a barrage of Dr.s that told me i have Transverse Myelitis ????

The MRI’s showed leasions from C3-C7 and buldging disks on L3 and L4.

 

Knowing nothing about this the Dr. told me it’s very rare and needed to do more tests, so 2 more MRI’s  ordered and Intravenious Steroid treatment started for 5 straight days! I coulden’t control my bladder or bowles, numb from the nipple line down to my toes, no sensations of Hot, Cold or Pain could be felt on right side of my body. My left leg did not work anymore, like it was dead!

 

Before i left the Hospital i started Occupational Therapy and had a brace for my left foot due to drop foot. I still could not walk at this time so i came home with a wheelchair and Physical Therapy seheduled for 3 times a week for 4 months straight!  The most frustrating part for me was the extreme fatigue that had taken over my body. The simplest of things would wear me out and i would have to take a nap. While in Therapy i gradualy gained strength and can now walk with a cane, (not very pretty) due to the leg spasms and nerve damage, i walk like i’m drunk. I do hurt every day! Transverse Myelitis is a Life Changing Experience, and i hope they can find the cause and a cure someday!

 

Thank you for reading my Story

 

Carol

Jill’s Story

I was a normal 49 year old woman with no health problems.  Out of the blue one day I woke up and my arms had a strange, rubbery feeling and I thought perhaps I’d slept with my arms in some kind of awkward position and dismissed it, thinking it would just go away.  By the next morning  I could not use my arms at all.  I could not lift them or make them function normally.  I was convinced I was having some kind of stroke.  I work in a medical office and my coworkers assured me this was not a stroke, but more likely some kind of disc problem in my neck.  I could not dress, brush my teeth, write or drive.  My daughter took my to my primary care physician who also felt this must be some kind of neck problem and ordered an MRI, which I had done immediately.  While awaiting the results over a period of days I was gradually able to use my arms again, but I had absolutely no feeling in my lower arms and hands.  I could not differentiate between hot and cold or textures.  I was directed by my primary care physician to see a neurosurgeon due to some kind of inflammation in my neck.  By the time we got to see the neurosurgeon I had almost normal use of my arms and just residual numbness in my fingers and parts of my arms.  He was very concerned and told me I did not have a disc problem in my neck at all – he felt this was an autoimmune disease and alluded to Multiple Sclerosis as his guess at what was the cause of my symptoms.  Of course my husband and I were stunned – I expected a course of physical therapy and ended up leaving his office thinking I had MS.  Many tests followed including more MRI’s with and without contrast of my neck and brain as well as an EMG, chest xray, bloodwork and spinal tap.  All of this was normal and showed no signs of MS.  The only abnormality was something in my bloodwork which suggested sarcoidosis, but even this was eventually ruled out.  Then came an AIDS/HIV test – also normal.  In the end I was told I had an episode of idiopathic Transverse Myelitis – that they had no idea what caused it and I was told that whatever symptoms I still had after three months I would probably have forever.  I was told I needed to have steriod infusions which I refused.  I am now 51 years old and my only residual symptoms are numb fingers on both hands (only my ring fingers and pinky fingers at this time) and patches of numbness on my palms and lower arms, bilaterally.  Looking back I can see several warning signs that I missed because I had never heard of TM.  Just prior to the episode of TM I had what I thought was a bladder infection – but no antibiotics seemed to work – and my urologist told me I was retaining about 5 oz of urine even after I thought I had emptied my bladder.  This is apparently a hallmark of TM.  Also right before I had the episode I had sore spots on my tongue which were quite bothersome – viral infections can also be a stepping stone to TM.  I have really learned to live with what happened – but to this day people look at my like I am crazy when I tell them about the day I woke up and my arms did not work.  Most have never heard of TM.  Thanks for letting me share my story and read the stories of others with TM.

Kim’s Story

I was 45 when I got TM. I was on a business trip to Dallas, TX when I was
stricken with this disease. I went out Sept 4th, 2004 and was to only be there
a week. I used to live 5 miles from the facility I was helping at so every week I
volunteered to stay another week to help out. I was scheduled to come home to
GA on Oct 8th, almost made it home.

I got up that morning October 6th and my right foot was asleep, I keep taping
my foot on the floor to wake it up. I figured I slept wrong and pinched a nerve by
9:00am I could not walk at all the tingling had move up past my knee cap and
when I tried to walk I kept walking into walls and falling down. The crew there
keep telling me to go to ER, and I just laughed at them, for my foot being asleep,
please!, well my 10:00 I can’t walk at all and was carried to a car and off to the
ready care. Doctor there did a few quick tests and sent me straight to the ER.
(He thought I was having a stroke). When we got to the ER 5 miles away they
were waiting outside for me. I kept laughing that they offered curb side service.
They rushed me to a room and there started the “Barrage of Test” by 3:00pm
and 2 MRI’s, 3 CAT scans ER Doctors are totally baffled can quote from the ER
Doctor was “We can not figure out what is wrong with you and have never seen
anyone present in the ER with such rapid case of paralysis. Now the “tingling”
and paralysis has moved up past my thigh, and I can no longer move my right leg
at all, not even wiggle my toe!
I was admitted to the hospital, by now my husband back in Atlanta is totally
freaking out and I am still making light of the whole situation. Lucky for me I had
family close by and some one was with me until my company few my husband
Brian out. When I woke up the next day my left foot started to tingle and I knew
at that point something was really wrong. It took the neurologist until Monday 5
days latter to finally tell me I have Transverse Myelits. After all the test it was the
doctors labeled my onset of TM as Idiopathic, to this day they can not tell me
how I got this.


I was in the hospital a little over a week and then moved to a rehab faculty next
to the hosp (more like old folks home) I was the young kid there at 45 years old, I
was in patient rehab for a week and finally sent back home to GA. I went back to
work a month after getting out of the hospital. My boss was been very supportive
and made my return back to work much easier than I ever thought it would be.

I use my walker around the house and wheel chair in public. My right leg still
drags like I’ve had a stroke; the “banding” pain around my waist and the burning
in my feet would be my two primary issues with this. I can not wear pants unless
they have elastic so I can pull them up over my belly button due to the banding
pain, I also can no longer wear shoes, socks even hurt my feet due to the
burning and stinging in my feet. This makes it hard to use my AFO’s because I
can’t take shoes on my feet.

It is so hard to explain to people that I in no way saw this coming. That I got up
one morning and with in 8 hours I was paralyzed. But life does go on and it’s just

the adjustment we all have to learn to deal with daily regardless if you have TM
or any other medical condition. You work and live life with has been dealt to you
in the most positive way you can.

Kim Harrison
Atlanta, GA

You can read more about Kim here:
http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.6357597/k.3480/Living_Life_to_the_Fullest_with_TM.htm

Julia’s Story about her mom

I was reading about T.M. on your website and people’s personal experiences and it seems that no one was paralyzed or had any permanent damage. My mom was perfectly healthy one day, and the next was paralyzed for life from her mid chest down and she has no bladder or bowel control. She has been in a wheel chair since 2003 after spending about 3 months in the hospital, maybe more. The first 3 weeks were spent in the ICU. I am shocked to be finding out her case of T.M. is way worse than any other cases I have read about. I really think her story would be great for those that are paralyzed now for life and will never recover. She is fully functioning each day in her chair, as much as possible, and is not giving up hope, her faith is strong.
Thanks for taking the time to read this.

Tom’s Story

I am a 50 year old male that was dx with TM after 14 long months. I first got sick with the Norwalk virus and then 14 months later and tons of tests they (neurologists) dx me with tm. I got hit so slightly the doctors cannot determine where the lesions are. I have all the symptoms and having lived with them for the last 14 months has been difficult on myself and my family. I look forward to getting to know more about your site and support. I live in Ottawa Canada.

Janelle’s Story

The Beginning

There is no certainty as to when my symptoms truly began. I say this because in 2009 I started to have random episodes of uncontrollable vomiting. I didn’t have the stomach flu and the episodes would last only one or two days. I also didn’t think much of it until I started to have more frequent and unusual episodes. In 2010 I went to my PCP who then stated that I need to see a gastroentologist. I had an endoscopy that revealed minor gastritis and I was told to watch what I eat and stay away from “spicy” food. There were no more vomiting episodes until 2011. I work at a Non-Profit agency helping troubled families and teens. This can be a potentially high-stress job, so when I started to have re-occurring vomiting episodes I shrugged them off as “stress related.”

October 06, 2011

I woke up and got ready for work. I was traveling to a smaller city to help a teen parent find helpful community resources. It had only been about ½ hour into the session when I started to feel nauseas again. I wasn’t sure if what I was feeling was contagious so I excused myself and rescheduled the session for a later date. I drove home as fast as I possibly could because I did not want to pull over on the highway and I knew what was coming. I came home and threw up for what felt like the 5th time that year. I called in sick for the day and took my anti-nausea pills and tried to sleep it off. The next day I still felt nauseas but I also had a throbbing, migraine like headache which I hadn’t experienced before. I couldn’t keep any food down and so I decided to drink some water and just sleep another day away. Part of me wondered if maybe I had caught something from doing so many house visits during flu season.

After about 4 days I was still feeling sick. My migraine got worse; I wasn’t able to keep any food and now any liquid down. I felt weak, fatigued, and malnourished. I went to my PCP who stated that it was just sinus pressure. She stated that I had some fluid in my left ear and prescribed me a 10 day antibiotic. She also informed me that all the symptoms should start clearing up within 5 days but that it was very important to continue with the pills until they were finished. If my symptoms were not better then I needed to come back and see her.

My trip to the E.R.

My symptoms started on a Wednesday afternoon, saw my PCP on a Friday, and by Sunday I was so weak, fatigued, and malnourished that my live-in boyfriend Jon (Firefighter and EMT) stated that we needed to go to the emergency room. The doctor at the emergency room had given me an IV to restore fluids in my system and then ordered a CAT scan because I stated that I was having severe migraines and my PCP had given me some antibiotics for sinuses. The CAT scan revealed what they said was minor sinus pressure and sent me home with a strong pain killer and another anti nausea pill.

My second trip to the E.R

The night after my first ER visit I woke up with a pain in my bladder. I had a strong urge to go the bathroom and yet I wasn’t able to. I woke my boyfriend up and asked him if he knew of any side effects to the medicine I was taking. We then “googled” the meds that I was prescribed and also helpful tips to help your bladder start. One tip was to take a warm bath, but nothing seemed to help me relieve my bladder urge. My boyfriend had to go to the station where he works a 24 hour shift. I called a friend to take me to an Urgent Care because it had already been almost 14 hours and I was still unable to use the restroom. The urgent care stated it was probably a UTI and seemed to not take a huge concern. My boyfriend’s sister took me back to the E.R. that day when I told her it had been over 17 hrs since I last was able to go to the bathroom. The doctor then catheterized me and said that I had an overwhelming 600ml’s in my bladder. I was informed that I would have to keep the catheter in for at least 7 days to prevent infection and that I would have to see a Urologist to get it taken out. The E.R. doctor stated that he believed I was having bladder troubles do to the constant vomiting and lack of liquid in my system. My symptoms were changing but we assumed it was due to not being able to keep down not only food but liquid as well. I still had a throbbing headache and now I would have on and off episodes of double vision, and light headiness. I also started to have tingling sensation in my feet and tremors (body shakes) they were not severe so to me it just appeared that I was too weak to walk “normally”. The E.R. doctor then asked me a series of questions about my new symptoms and said it sounded like vertigo. He prescribed me some vertigo medicine and sent me on my way.

Back to the PCP

The day after my second trip to the E.R. my mom and boyfriend insisted that I see my PCP and find out what is really causing all my current symptoms. They did not believe simple sinuses’ could possibly affect me in such a way as this. My PCP stated that she still believed it was just sinus pressure and that fluid in the ear can cause vertigo symptoms. She did not appear to second guess her last diagnosis and told my mother that she would get me an appointment with an ear, nose, and throat specialist to confirm her theory.

Urologist and New Symptoms

It had been eight days of constant vomiting, migraines, body tremors, tingling feet, and now bladder retention. I called the urologist to set up an appointment and asked if they could see me sooner to take the catheter out because it was just another obstacle in my way. The urologist stated they could see me in three days. During this time new symptoms along with my prior symptoms started to occur such as, now constant double vision, pain in my torso and mid-back, along with no feeling in my lower back, buttocks, and legs. When it was time for me to see the urologist my father picked me up to take me because I was unable to drive myself. When he came into my room to help me out of bed, I could hardly walk three steps without vomiting, I couldn’t see much, and walking was difficult without leaning on him and going very slow. My father asked the urologist for a wheelchair because he didn’t want me to suffer any more or do any more damage by having me walk so far and stand in line to wait for my name to be called. The Urologist was unsure of my symptoms and believed that the E.R. doctor may have been correct about the lack of fluid and took the catheter out. She stated that I need to drink as much as I can even if I wasn’t able to hold much of it down. I also needed to come back to see her if any symptoms change or if my bladder does not start on its own.

Ear, Nose, and Throat

It had been over a week and a half since my first vomiting episode and I seemed to be getting worse instead of better. My PCP had theorized that I had sinus pressure and needed to see a specialist. I had a co-worker of mine take me to my appointment because I was still unable to walk on my own let alone drive myself anywhere. At this point, I had been prescribed at least 12 different medications though I was not taking them all at one time. For me this was getting ridiculous, especially if it was only sinuses that were causing such severe issues. The ear, nose, and throat specialist also did a series of tests on me and had come to the conclusion that I did not have a sinus issue. He appeared “upset” that I was sent to see him because it was clear to him that this was not the issue. I told him everything to this point and asked for his medical opinion. I don’t live in a very large city, but my parents do, 3 hours away and I asked if it was better to seek medical help over there. He said it was better to stay in town because each doctor would know each other and the results would come back sooner than in a larger city. He informed me that he would have his assistant call my PCP and speak to her about his findings or lack thereof and ask her to contact me as soon as she could. I thanked him for his honesty and also for not “medicating” me on something he couldn’t find.


That night I told my boyfriend everything that had been going on. (This was the worst timing in the world to be sick. Not only does he work a 24 hour shift 3 days a week, during this month he had an 8-5 training that lasted for 3 weeks. I am 25 years old and pretty independent so when all these symptoms started to occur and I had to rely on others it was difficult asking so many people to come to my rescue especially because I didn’t know what was wrong and I didn’t want people to see me in such a difficult position.) My bladder was somewhat working, or so I thought. What was happening is something called “bladder retention” my bladder was so full of liquid that some would overflow out causing me to believe I was relieving even when I wasn’t. I had no feeling anymore so I couldn’t tell when I needed to urinate and the first sign was when I had an accident in the night. I figured that maybe I was now drinking too much and my bladder was trying to re-adjust.

Neurologist

After informing my mother about my bladder not working and then over working, the concern I felt from the ear, nose, and throat specialist, along with all the E.R trips she stated that I need to find a neurologist. She feared that I was showing symptoms of Multiple Sclerosis but she didn’t tell me this at the time because she felt I was going through enough. Luckily, my boyfriend’s mom had a few resources in the medical field and I was able to get a referral without waiting for my PCP (who was on leave). My mom called for an appointment and they were able to see me the following morning. I asked a friend to take me the next day because I was still in no condition to drive. The medical assistant asked me a series of questions about all my past and current symptoms. He said my blood pressure was low and was interested that I had been the exact same weight for over a year. I asked him if this was a signal for a possible diagnosis but he did not have an answer. Later, the neurologist came and asked me to walk from one side of the room to the other, knowing this was difficult for me but wanting to see what I was struggling with. He also did an eye exam and several other tests. He then said something that I will never forget, “You are a very complicated case, and you are young with no prior medical issues and no genetic problems. You don’t smoke or drink and take relatively good care of yourself. I do not know at this time what is wrong with you, but I promise, though it may take a long time I am going to find out what is causing all these symptoms.” This was it, for me it was heartbreaking and I lost my strength. I went to my friend and just broke down crying. I was scared that no one would find out what was wrong and I would just continue to deteriorate. She tried to give me words of encouragement but I was just not ready to see the light at the end of the tunnel.

During the next few weeks I struggled with my health, symptoms, and positive outlook. I had a spinal tap, 3 MRI’s (one that included dye), a nerve electo test, and several blood tests. This took several weeks. I was still not working, and had no answers for myself, friends and family.

November 15, 2011

I had what I hoped to be my last neurologist visit with a prayer for some answers. Some symptoms started to disappear and others started to appear. My double vision, nausea, and migraines were no longer, but my bladder was retaining so much fluid I was re-catheterized for a few days then taught how to catheterize myself. My body tremors got worse before they got better, and my lower back pain and poor circulation in my legs and feet were still lingering.

During my neurologist visit I had my mother and boyfriend with me for support. We were prepared for the worst but hoping for the best. My neurologist stated that I do not have Multiple Sclerosis. I have no lesions in my brain and nothing in my blood. I have slight inflammation in my T and C spine which was causing all these bizarre symptoms. He informed me that I have Transverse Myelitis. He said it is a rare auto immune disorder and believes that for some reason my immune system over attacked a virus causing this occurrence. He could not give me any further information that I wanted or even more so, needed. I wanted to know why this happened to me, how this began, how to treat it, and will this happen in the future. The only thing I was prescribed was a 5-day IV cotorsteroid to help with the inflammation. I was then told to start physical therapy to work with leg functioning and was then sent home. I was truly grateful that I did not have MS or NMO but that does not guarantee I won’t have it in the future.

Present Day

I now do physical therapy 3x’s a week. My bladder started to work on its own after 2 weeks of self catheterizing; although I now go 6-7x’s a day maybe more. I am back to work but am only working part time until I get my energy back. I am on no medication and hope to keep it that way. I take vitamins everyday and a supplement called Cell Food that contains dissolved oxygen, trace minerals, plant sources, as well as amino acids and enzymes. I had some intense weeks that tested my spirit but through it all I had a strong support system that I believed helped encourage me to continue day to day. My goals have changed slightly, I still enjoy the job I do working with at-risk teens and believe that my illness may give them some insight onto dealing or living in a difficult situation and overcoming all obstacles. I have always eaten healthy but now I am more aware of what the nutrients can do for my body, and I am also trying out for my local city’s women’s roller derby league. I may not make it into the league but I wanted this before I got sick so why should I let my illness stop me? I still have fear about possible future flare ups but living in fear only makes you weak and if you have this diagnosis you are too strong to quit; trust me I know this because I lived it.


 

Rose’s Story

HOW IT BEGAN

On May 15, 2007, I was having a normal Sunday evening at home, when after working on my laptop for a few hours, I decided to go to bed (at 10:30pm). Once I put my feet on the floor, after having them up on the coffee table, I noticed my left foot had fallen asleep…really badly. But since it was late and I had to get up at 5:30a the next day, I figured I’d just sleep it off. The next morning I noticed my right foot was now asleep. Odd, I thought, pins and needles isn’t contagious as far as I know….it was much milder than the previous night so I decided to ignore it and get on with the morning. By the time I got to work I noticed both legs were now feeling rather odd and my left leg was beginning to hurt. Tuesday rolled around and I was clumsier than usual, bumping into things and dropping things. My pins and needles was intensifying and walking was becoming difficult. On Wednesday I decided to tell my boss, not my immediate boss, who was home with a terrible fever and migraine, but my COO. He told me it was cool if I felt I needed to go to the doctor or hospital..just to let him know when I was leaving. I had called my Back doctor, thinking I must have ruptured a disc or something. (The previous Nov. ’06 I had a set of facet injections to my lower spine to handle some severe pain in my lumbar spine.) On Thursday, I was much worse, I called the doctor’s office again, and was told he would not be available until Monday, I then panicked and went to the ER by 3pm that afternoon.

THE ER

After giving the attendings my back history, they felt I was on the right track and NOT an emergency patient, thus no MRIs, but did get a hold of my doctor so I could have a steroid pill pack for the next 7 days…to help with any swelling. (Apparently that was a lucky move because later research I did pointed to early treatment for Transverse Myelitis with steroids to be a good thing.)

FINDING THE TRUTH

I finally got in to see the back specialist the following Monday and he was convinced it was my herniated discs…he mentioned they were nothing to write home about but we could do a new set of injections for the pain…nevermind that I was not in pain but experiencing numbness throughout my pelvis through to my toes…

I was not convinced and decided to ignore him and try to find another specialist…a joyous hunt through my insurance company’s web site to find another doctor who would see me sooner than 1 month out. My boss finally found out and was furious with me, for not telling him and with my spinal doctor. He did some recon of his own and found me a specialist that would see me that Friday. He only did a consultation with me but after reviewing what I had (current Lumbar MRI, last Nov’s Thoracic MRI and an Xray he did of my neck) his diagnosis was…he did not know what I had. I did have the herniated discs in my Lumbar and Cervical areas (based on my age, having a baby, and job). He said the other symptoms were neurological and I needed to see a Neurologist as soon as I could. He gave me the name of someone he felt was the best.

The recommended Neurologist was dealing with a family emergency and would not be able to see me for another 5 weeks…out of the question for me. Once again, back to the insurance web pages to hunt for a neurologist. Picked at random I landed on Dr. Daniel Rovner who was available that Friday (now Jun. 1st). Much to my surprise he already had an inkling of what I had but decided to do the Thoracic and Cervical and Brain MRIs…one at a time so as not to piss off the insurance company. He also ran a Spinal Tap and comprehensive blood tests (testing for everything from STDs to viral issues) . The blood work was normal, the Cerebral Spinal Fluid (CSF) showed tell tale signs of an infection in my cord. Transverse Myelitis was the diagnosis. He said I was lucky that it did not paralyze me in the first day. He was confident (hopeful?) that this would be a one time occurrence and I would recover my movement and most of the sensory issues would go away in about 1.5 years. Since I have constant pain in my mid-back area (bra-strap area), he determined I have a hidden lesion there causing the over-stimulation issues in my pelvis and legs. (Dr. Rovner later had me read a book in which the author was a patient of his..it helped me a lot: The Best Seat in the House: How I woke up one Tuesday and was Paralyzed for Life)

So I could not walk more than a block (or sometimes half) without my legs erupting in an over-sensory- vibrating, tingling, inability to feel my legs as normal, like jello mess that takes 45min-1hr to return to a semi-normal state of constant vibration-tingling-minor-over-sensory feelings from my pelvis to my toes.

I discovered, after trying swimming for two weeks….can’t do that, tried just sit-ups and minor arm work at the gym..can’t do that, then I was hit hard when I overheated at work on Sept. 20, 2007..it sent me to the hospital and pointed out that I need to rest. I was off work for about a week when all this first hit, but that did not really allow for me to deal with the total future implications of this and my mental health. After careful discussion with Dr. Rovner and my husband, Morgan, I decided to take Oct. 2007 off.

OPTIC NEURITIS

Well, the next week, the week of prepping back-up assistance for my boss, I discovered I had an odd headache that triggered a 3-day migraine. By the end of that week I was fried to the max. I made an appt. with my Optometrist since my left eye was now bothering me and were the pain in my head decided to rest in. I had a strange sensation of something in my field of view and was constantly looking at my sunglasses expecting to find a smudge..but nothing was there. I felt pressure from my nose to my eye and it hurt to move my eye. The following day from my visit with the eye doc I began to lose the ability to see certain colors and all colors were fading, I had noise in my vision (kind of like this but lighter and more gray ) and the pressure subsided but the pain was still there. I called Dr. Rovner and much to my dismay his initial reaction was…’Damn’…not something I really wanted to hear. Thus my new diagnosis of Devic’s Disease (Neuromyelitis Optica). A much worse diagnosis in my opinion… sigh!

I underwent daily IV treatments of Solumedrol that Tuesday through Friday to counteract the loss of vision due to an inflamed Optic Nerve. Double sigh.

CURRENTLY

Those were scary times, my vision has since healed but now I have migraines on my left side and random other issues. I still have all the buzzy/fuzziness in my legs from my hips to my toes, walk like a duck, and have difficulty going up starts…something that will never change since I have healed as much as I will (per the good doc). I now take Rebif for a diagnosis of MS after the ON attack but am looking towards being treated for CCSVI. I was scanned recently at the Hubbard Foundation and discovered to have narrowings and refluxing flow in my internal jugular veins and narrowings in my azygos vein. I am trying to convince a local FSIR to treat me. He has gone to a CCSVI symposium in NY and is meeting with Dr. Scalfani and also sitting in on a few venoplasties. Hopefully he will return with an interest in treating me. Otherwise I will be going back to San Diego to be treated by the Hubbard Foundation.

Please take a look at Rose’s blog where she is updating information prior to CCSVI treatment: Rose’s Blog

Thanks for sharing, Rose! Good luck in your search for effective treatment!