I am SOOOO glad I found this web-site! I was infected with West Nile 54 days ago. I had a fever for about 2 weeks before I was admitted to the hospital. I was
released from the hospital after 3 days with a diagnosis of West Nile and meningitis. Unfortunately, my left leg from the waist to the knee was partially
paralyzed. I have been told the paralysis can be from damage to the spinal cord or from peripheral nerve injury or a combination of both. Best case scenario,
from the limited research, is full recovery for my leg (less likely) after a year of rehab. I am surprised at the recovery thus far. When I left the hospital I
was dragging my left leg behind. Now, after 54 days and about a month of physical rehab., I can use my left leg. With concentration, my walk appears normal
over a limited distance. I cannot lift my leg from a sitting position as the adductor muscles, hip flexor muscles and the quad muscles are severely
compromised. But I am seeing improvement every day and am hoping for a full recovery. Does anyone else have paralysis or used to have paralysis? If so, how
have you progressed? Thx, Jeff My tremors have disappeared. My short term memory is coming back. But the fatigue is still constant. I sleep 12 hours a day.
New here with partial left leg paralysis
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 jeff |
New here with partial left leg paralysis |
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Posts: 2 (11/11/08 19:56:23) |
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mom2babyd |
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Posts: 22 (11/12/08 14:30:35) |
HI Jeff,
welcome to the board, sorry you are here, but glad you found us. I myself did not have any paralysis, i did have tons of peripheral nerve pain issues and had to tell my body to do things it used to do without thinking, like walk, turn pages in a book, etc. I also had some mild tremors and extreme weakness where i could hardly lift a book, my baby or spoon...and list could go on about my issues. However, physically i've made a 90% recovery after 1 year, so there is hope for you! i also know 2 ladies here in my county who had WN in 2005 and 2006 and both of them were in wheel chairs out of the hospital and now are both back working full time and hiking and doing yoga again. I'm not back at work yet, as i still have some residual flare ups and fatigue but i'm still improving month over month and am trying to stay positive. If you go through old posts you'll see everyone's stories and sufferings and check the progress as well. There is lots of hope and tons of support here! it's tough and lonely at times, but we are here for eachother on this board and recovery sounds as though it is already a frequent visitor in your life. Be positive, give yourself time to heal and don't push or rush yourself or feel guilty about where you are. Patience and love are what you need to give yourself now as well as hope and positive thoughts! take good care! gigi |
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jeff |
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Posts: 3 (11/12/08 22:49:17) |
Thx Gigi for your encouraging e-mail.
For the past 56 days it's been a lonely battle as none of my family and friends truly understand.......the fatigue, irritability, anxiety, depression, ect. I'm in southern California and I am the 26th person who is on record for contracting the virus in my county. 26th person in a county of 3 million! Only 1% of the people who get the virus get paralysis. I am so glad to hear that you knew people who were non-ambulatory and are now hiking! I was an avid runner, swimmer and hiker before this and that has been the worst mental burden of all----loss of muscular function. So I am dedicated to physical therapy. I am seeing some sort of physical improvement every day. And as I wrote earlier, the tremors, jerks and short term memory loss appear to have resolved for now. Fatigue is still a constant. Anxiety has been an issue. I have a lot more optimism after coming across a story on the web.... I found a detailed account from a physical therapist who worked with a woman in Colorado who had paralysis after WNV meningitis. She was extremely athletic before she contracted the virus. By the end of a full year after INTENSIVE physical therapy, she has almost fully recovered. (google "physical therapist evaluation intervention patient west nile virus paralysis"). The key to her almost full recovery was intensive physical therapy. Others with paralysis who did not engage in extensive physical therapy did not fair so well. I'll keep everyone updated as I realize getting information to/from others is paramount! Jeff |
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jack raney |
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Posts: 72 (11/13/08 18:44:03) |
Jeff,,,,, your not alone. In Southern California their are thousands of people who live the life you feel everyday, the problem with them is they don't
know what is wrong with them, their among the 80% of the people that never knew they had it or why they feel the way they do.
It get's better, maybe not how you want it to be, but it get's better. Jack Raney
Last Edited By: jack raney
01/18/09 22:42:16.
Edited 5 times.
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jeff |
Thx Jack | ||
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Posts: 4 (11/13/08 20:40:16) |
Thx Jack. Today was such a good day. Progress in physical therapy and my mood was the best it's ever been since I left the hospital. So I went out in a
social setting and felt like a duck out of water.....walking with a cane. Probably in my own head.....but I'm among the handicapped at this juncture. I
tell myself I am lucky. Could have died. Could be in a wheelchair. Need and am wrapping my brain around this. I must say I have finally began to appreciate the
things in life that really matter.....family, friends, sunsets, ect. I had the fast life before all this.....porsche's, beach houses, first class trips
around the world. Now it's a simpler life. I tell myself this is the learning lesson. A month before contracting the virus, I was jogging on the beach
thanking God for my legs to run with. But I silently thought, "everyone on the beach is jogging or swimming and have the benefit of health". Then
BAM, I lose the use of my leg a month later. So, NOW I fully understand the matter of health. The most important thing of all! It's a trip how many people
can't deal with my affliction. I can see their uncomfortableness. I can now fully appreciate and empathize with the handicapped. So I have to look at this
as the blessing. A connection that I have never had before. I am doing my physical therapy at a VA hospital. I feel like I am in a club. All the guys in
walkers, wheelchairs, canes, ect. wave as we pass one another. Funny.......like when I had a motorcycle and everyone riding one waved to each other. Thx for
your feedback. Regards, Jeff
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Jclauson |
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Posts: 71 (11/15/08 05:01:19) |
From all the research I have done and from my own personal experience, physcial theapry is the single most helpful thing one can do for this virus. I
fortunately did not have any paralysis, but did have a lot of vision issues, severe muscle weakness, and many more neurological problems including tremmors,
twitching, etc.
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thissucks |
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Posts: 3 (11/19/08 21:10:50) |
Hi Jeff,
I am new here too. I have acute Flaccid Paralysis as well. It effected my left side but not my face. I have had WNV since July of this year. The paralysis started in Aug. I have been going to physical therapy for 8weeks now and I am slowly making improvement. I am very fatigued too. I am so glad this website is available. Reading the symptoms of what everyone else has, has been a great help to me because the symptoms I experience I was not sure if they were related to West Nile Virus. I have a headache, neckache and backache everyday. I occasionally get naseaous, sometimes get the "inside shakes", and the strange sensation from the knees down. Someone here gets that too and I am so glad you posted that. Daily I am fatigued and if I do too much the weakness increases. In addition, I muscle and joint pain just about everyday. This isn't easy but with support of those who understand it helps you get through. |
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gearhead |
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Posts: 151 (11/19/08 21:19:05) |
Hi! Love the profile name, very appropriate!
Welcome to the site. -Bree |
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brian |
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Posts: 23 (11/21/08 08:22:13) |
I agree with thissucks, just knowing and reading about others going through the same thing is a big help. I think we all feel alone to one degree or another
because unless you are going through this you've no idea what it is like to be so "messed with".
So many symptoms I've had I did not realize were part of the WNV until I read about others having the same things on this site. What a relief to know that there is a reason I'm losing my mind. Here all this time I thought I was going crazy! Wahoo! I am! But there is a reason! Rachel |
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jeff |
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Posts: 10 (11/21/08 23:52:18) |
Great name! Thought I might be the only one with paralysis/severe muscle weakness. I have been in rehab 5 1/2 weeks now. Am able to walk w/o a cane or need one
if walking longer. Just started aqua therapy. Thought I'd just jump in the pool and do laps.....but I started to sink! So stuck with basic
exercises....marching, walking side-to-side, backwards and forwards. Did it for an hour and was shocked I was WORE OUT! Realize it's really important to
slow down based on everyone's testimony. Was trying to go balls out, but I don't think so.....think I can live with the fact that I have had a lot of
improvement in 5 weeks. Found my worse days involved alcohol. Had 2 glasses of wine tonight to help anxiety but I was completely fatigued and my bad leg went
numb. I was out socializing but could not get past 5 hours. I think it must have been the social stimulus or the alcohol as most days I don't have an
energy drain. My good friends have made comments about my personality changes. They don't understand that I can't take a whole lot of stimulus at one
time. I feel an anxiety overload with a couple of people. Tingling in the spine leading to the neck. Can't even imagine a party setting......way too much
now! I am hopeful that the leg will have good prognosis. Have seen improvement after every new exercise. They say the best months are up to the first 6 months
then likely to be a slow steady progression afterwards. But everyday with improvement is a good day. My hospital records state that I had meningitis. But I
don't think there is a test for that? Just symptoms and a doctors guess as if it is meningitis or the "feva". Anybody know? Don't think it
makes a difference. Not with paralysis......something separate from the other after affects associated with virus....
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Jclauson |
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Posts: 77 (11/22/08 05:10:00) |
you are right...alcolhol is not good for us right now. I do notice that it affects me horribly. You may also want to look for other triggers as well....I
learned that since getting west nile...chocolate is the worst for me. My symptoms get so bad and I am in bed for days to weeks. Chocolate never bothered me
before.
So you see it really sucks...I told my friends and family to be careful....you can't take alcolhol and chocolate away from a woman and not expect some negative outcome (LOL). I'm over a year into this thing, and still can not have either one! Same affects. I was told however, that in time I should be able to have them again. It is really not a huge loss for I never indulged into either one of them but when I want them...I want them. |
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brian |
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Posts: 25 (11/22/08 07:34:27) |
No chocolate? Just shoot me now......
Jeff, you mention over stimulation being a drain on the system. I understand. Last night I wanted to get out of the house so I went with my husband to Cost-Co. Five minutes into walking around and I looked like a shuffling hunched over little old lady. I was done for the night. I have a son with special needs. Some of them are nurological. One of the things that we do for him to help him with over stimulation is we have a swing in our home that hangs from a door frame. The motion needs to be front to back. Can't be side to side. I realize not everyone has a swing in their home or access to one but just thought I'd put it out there as a suggestion. I do not know what it is about the swinging that helps bring everything back to where it needs to be nurologically but it does........ |
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thissucks |
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Posts: 8 (11/25/08 13:42:58) |
I started water therapy too. I only exercise for 10-15min in the water but by then I am really tired. It sure does help because I have terrible joint pain and
it is so gentle on my joints. Anyone else having joint pain while exercising should try therapy in a pool.
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jeff |
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Posts: 14 (12/02/08 18:35:28) |
Don't have any chronic joint pain. Overdoing a work-out can lead to other problems like joint pain, tendonitis, ect. So I try and do only what feels
comfortable. I have only had one aqua therapy appointment. Will start doing it 2 times a week starting next week. I was encouraged by the improvement I had
after one session. They say that of the recovery one will get regarding paralysis, 60% will occur in the first 3 months, 80% within the first 6 months. Then a
slower, steady improvement afterwards until improvement plateau's. It's been about 2 1/2 moths since I was released from the hospital and there has
been a lot of improvement. I can walk, ride a stationary bike and now can complete a lot of leg exercises I couldn't do when I was released from the
hospital. Most of the other symptoms (memory loss, fatigue, tremors) have not visited me for the past couple weeks so I am crossing my fingers. The neurologist
did an EMG on my leg yesterday. He explained to me that the improvement is due to "collateral sprouting". Peripheral nerves that are still operating
will sprout to the paralyzed areas. So, even though it is a spinal cord injury, there is repair going on. Time will tell as to how much an individuals body
will sprout to the affected area's. How much improvement have you had? How severe was your initial paralysis?
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jack raney |
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Posts: 85 (12/02/08 19:14:26) |
Jeff 4 years out and what I haven't got back I figure I really didn't need in the 1st place, I hope you don't believe that. I don't like
telling sob stories but I feel this time one is in order.
I was paralyzed on the right side of my body, no arm movement, no leg movement, could only turn my head so far. I had damage to my sympathetic gland so I'd sweat like crazy even when it was freezing cold. I left Pomona Valley Hospital to do a study at USC, decided not to participate in the study and in the end I had to leave the hospital still in the same shape I was before. I ended up in a rehab hospital for 2+ weeks trying to get the basic life skills to return home. After leaving the rehab I still couldn't walk or use my right arm, had to depend on my wife and kids to set me up so I wouldn't need anything while they were at work and school. I spent 9 months 3 times a week in physical therapy, only to get so far and was dissatisfied in my results I stopped going. I played baseball up till the day I got sick, coached or managed a team since I was 16 years old ( in dog years that's 203 ). After a year of working on the one thing I've loved to do I was faced with the truth, I went to play catch and couldn't throw the baseball. It hurt really bad, I tried to catch infield practice and it made things worse. I excused myself and sat on the bleachers and cried. After that experience and the reality of it made my life and others around me Hell. One day I played over the line with my oldest son and his friend, I knew I couldn't throw and running was an option for me so I figured this was right up my alley. I had a great time playing over the line, the kids didn't care about what I use to be or who I thought I was. They were glad that I didn't let what happened to me stop me. Today 4 years later, am I making improvements? Yeah. I can't say it enough that it takes time for you body to recover from it. What I 've learned from my experience is you can't let it define you, did it define me? Yeah. Take one day at a time, push when needed, pull back when you feel like your falling, take some calculated risks, reflect on yesterday and remember tomorrow will be better, don't beat yourself up and remember it gets better, it does........................ Jack Raney
Last Edited By: jack raney
01/18/09 22:40:31.
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jeff |
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Posts: 15 (12/02/08 19:40:29) |
Thanks for your story Jack.
I am trying my best not to think about what I can't do (hike, swim, jog) but what I can do (walk!!). When I found I initially couldn't walk I was totally freaked out. All I wanted was to walk and I finally got there. So now it's other goals: hike, swim, jog (?). I empathize with being healthy up to the day of contracting the virus. You wrote that you went to rehab for 9 months before being dissatisfied. Are you now walking? Is your right arm better? |
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jack raney |
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Posts: 87 (12/02/08 22:17:46) |
I'm walking, I do things that maybe I shouldn't do. I can't pound a nail, throw a ball and had to sell my truck because the way it opened was a
motion that I couldn't do anymore. I was dissatisfied not because of the treatment but for the lack of treatment, they had never had to deal with anyone
who had so many problems before.
I live my life like everyone else, I have some quirks that I've learned to live with. I guess you'd have to see me to understand that I don't let what I can't do bother me anymore. Before West Nile my life was pretty complex, West Nile sort of simplified it, kind of sort of. Positive thinking has been one of my helpers in recovery, hey I didn't learn it over night is was something that a lady named Derba posted and a light went off in my head, since then even if I'm down I post something good. It getts better, Jack Raney
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granma3xnow |
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Posts: 4 (12/06/08 19:48:00) |
I have relocated to central Indiana...everyone here wants to KNOW where the squeeter bite took place. The doctor here is says I expect too much too soon.
HELLO....It's been about 16 months now...vertigo, aches and pains, blinding headaches, and unrelenting fatigue are still with me. Jack is correct, we need
to have a sense of humor. (doctor also seeezzzzz I've got a great sense of humor so he thinks I'll make it) Started Mental Health, Depression
Group.....it isn't as bad as I thought!!!
At least I don't have the problems that other people do...I've really come a long way in 16 months. I'm hoping and praying that I'll get the rest of the way. |
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jeff |
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Posts: 17 (12/06/08 21:57:46) |
Granma,
someone here stated they had good luck with "Cymbalta". Might be a good lead for anxiety and depression. I am about 3 months out (from contraction of virus) and so far, all the symptoms have gone away (for now at least). But I still have the challenges of a very weak left leg. But everyday I see improvement. Hope you get better. Have you tried any medication that works? Jeff |
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granma3xnow |
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Posts: 5 (12/07/08 07:06:33) |
Jeff,
I'm trying to do this without medication. There is nothing they can give me to "speed" up the nerve re-generation. I take ibuprophen to manage the pain, and my son-in-law tells me not to think, so my head doesn't hurt. When I first started group therapy, I thought that my problem was so serious. But found out different. There is an old saying, "When God give you back, don't ask questions." My neurologist has said he would have to go back to school to answer my questions. (this doesn't stop me from asking more questions, tho) When I look at all of the things going on in the world, my problems seem so small. Fran |
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mumto7 |
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Posts: 29 (12/07/08 08:17:00) |
Fran,
I agree whole heartedly. This morning when I booted up my computer and saw the news, one of the top headlines was of a family that as of last night is now facing tragedy. Both mom and dad killed in a car accident leaving a 5 year old and a one year old behind. Wasn't their fault. A truck wandered into their lane and hit them head on. I read this story and said, "yup, see Rachel, it could always be worse." I am grateful I am here alive with my children even if I am bossing them around from my bed. 
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