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Old 01-12-2001, 06:13 AM   #1
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Thumbs up How would you know the difference from PPS and other Illnesses?

I am wondering how anyone knows whether PPS is the problem or another illness. My husband had the severest form of polio as a infant and is 63 now. He has several disorders including IBS and Arthritis, severe scoliosis. Many doctors have seen him and no one in my area is familiar of knows anything about Polio after-affects. I was a member of the newsletter for PPS for a couple months and the email posts were of pain and it appears to me that; when a doctor does not know what something is they label it PPS. These problems that I read seem to me as the same as problems listed on this board..any one of them. Any ideas of distinguishing the difference and KNOWING it is PPS rather than common ailments?
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Old 01-16-2001, 02:39 PM   #2
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Hi. my first time to reply to a message. I can only say from my experience.. that for me PPS has muscle atrophy, new and un-explained muscle weakness, fatigue that only gets worse if you continue doing what you are doing, like walking, standing, sitting, normal every day things, and a burning pain that only gets worse. These symptomes can be relieved with rest. Then if you start over and they come back, rest is the only answer. A good PPS doctor can tell how bad a person is by doing an EMG to find out the damage at the initial polio time.

 
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Old 07-24-2001, 02:06 PM   #3
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The response from dotgp (?-got that wrong) is pretty much right on. I am 66 and started having problems she describes about 15 months ago. After going to various docs, none who gave me a reasonable answer, I found a very knowledgeable doctor in San Francisco.

You need to treat the problems as you would any problem, and then rest is the basic answer. There are lots of help---orthothics, some types of exercise, parceling out your energy to do projects, etc. It is real,this PPS dragon. Good luck.

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[This message has been edited by moderator1 (edited 05-04-2003).]

 
Old 05-10-2004, 10:46 AM   #4
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Lightbulb Re: How would you know the difference from PPS and other Illnesses?

Sometimes you need an MRI to be sure:
This is my post polio story: Polio as an infant, 2 childhood orthopedic surgeries on "polio foot", active and even a bit athletic in 20's and 30's, got lazy in 40's and out of shape (maybe noticed that polio leg was slightly weaker. Stairs were slightly harder work in late 40's but I ignored it, planning to "get back into shape soon". Age 50, finally decided to get into shape, trying to bike and jog a very short distance at first. It kept getting more difficult until, I realized I couldn't raise my right leg sideways at all! And I had always assumed my polio had affected only below my knee! I ran to the net and learned about post polio. I was careful to refrain from overuse. As was true with a lot of my "post polio friends" I realized that eventually if I kept getting weaker I might need to go onto Social Security Disability. I started doctoring to get a diagnosis of post polio onto my medical records, as I was advised to do. I was tested to rule out other problems, negative, of course--until the MRI—lipomyelomeningocele!!!! A congenital neural tube defect related to Spina Bifida! Correctable with surgery! I ran to the net again and to my surprise discovered that it causes orthopedic deformity just like mine -- and just like polio. It took a few minutes to really sink in that I never had polio at all, or post polio. And according to my neurosurgeon, overuse is not an issue, what I need to avoid until I get the surgery is any jolting or bouncing moves, or stretching. I had been stretching a lot.
How could I have been so misdiagnosed? My mother was alone during a polio epidemic of the early 50's, My father away in the service and she had no transportation and was far from a hospital. I got very sick with a fever, she called the hospital and nurses told her to keep my legs in very hot water. The next day I broke out with the measles. A few years later at age five, the doctors, looking at my "polio foot" pronounced the diagnosis that it had indeed been polio.
This is rare, but there must be other people out there with this condition that so closely mimics polio and post polio. (There also can be some visible signs at the base of the spine, which I have, and many doctors have seen. They just took my word for it that it was "just a birthmark".)

I’ve since had the surgery to repair the defect and stop the degeneration. My neurosurgeon says that indeed there are probably hundreds of other people out there that have been misdiagnosed. I would like to reach everyone in the post polio world with this information. Anyone who can’t remember an acute illness of polio should consider this a possibility. The great thing is—this degeneration can be stopped with surgery!

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Old 05-10-2004, 10:51 AM   #5
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Re: How would you know the difference from PPS and other Illnesses?

Oh, I forgot in my posting, bowel issues are another problem with lipomyelomeningocele.

 
Old 04-17-2005, 03:04 AM   #6
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Re: How would you know the difference from PPS and other Illnesses?

From what I've read, PPS is the diagnosis when other things are ruled out. Apparently not everyone who had polio later got PPS.

About arthritis: my doctors had for years said I had arthritis in my hips, but when I finally saw a doctor who is knowledgeable about PPS, he said it was bursitis, not arthritis. He said, and so does most of the PPS literature, that bursitis in the hips is very common for PPS sufferers.

A huge key to coping with PPS is never, ever push yourself physically. This always results in faster loss of strength.

 
Old 07-25-2006, 02:32 PM   #7
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Re: How would you know the difference from PPS and other Illnesses?

i don't remember having polio, i was a little toddler in the middle of an epidemic. in fact, no one knows for sure that i had it except a doc looked at my short achilles tendons, malformed feet and other stuff when i was maybe 8 or so and said 'this child had polio at some point.' but it was immediately forgotten, except by my mom who used to get drunk and say, i think you had polio. she was a trip.

i am 64. maybe 10 years ago or more, i started falling down all the time and breaking or spraining stuff. i was a respiratory therapist, older than everyone else by twice so didn't think it was was weird to be tired after a 16 hr. shift. i had to stop a 40 yr. love affair with classical ballet because of pain, nearly killed me emotionally.

then i started to atrophy in legs and fall down a _whole_ lot. one day about 5 years ago, i couldn't push down the clutch in my car or lift my left leg into the car. called my neuro. had ALS tests, negative, thank all the deities. had had a head MRI recently and there was no plaque, so no MS, most likely.

with the history of 'maybe, probably polio' and the onset, which became acute after i sustained a really bad injury, it seemed classic. and has remained so. it cycles up and down in severity (rather rapidly), is improved vastly by rest. injuries are the big danger; i am now in a motor wheelchair since nothing works real well and i am trying to conserve what i have left. i think the years of russian-style ballet training tore up my muscles (it's extremely rigorous but at least left me with a good sense of body: center, balance, etc)

unfortunately none of this has done me much good. i seem to have pps and it's just not fixable. one of the hardest things is shutting people up who lecture me about how i should 'get out of that thing before you get addicted and walk a few blocks' or 'lift some weights, build yourself up.' both of these lectures came from DOCTORS. just ignorance....

hands giving out, gotta go. glad to be here. wish i could directly address your question better.

carole

 
Old 08-01-2006, 05:22 PM   #8
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Smile Re: How would you know the difference from PPS and other Illnesses?

Carole - sorry to hear that but I hear that you must conserve to preserve and you are right resting is the best thing for your body. Hey, hon if you need a motor chair to get around keep on going..... Alot of people with PPS need this when they go out. I am not to that point- but sometimes I feel like I could use a cane.

Still kinda having that denial feeling.

Hang in there and keep on going lady

Janet

 
Old 05-14-2007, 05:48 AM   #9
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Re: How would you know the difference from PPS and other Illnesses?

Hello to all!
I posted a thread on neuro disorders about transversemylitis and it seems to be alot like the symptoms of polio. My mom is 60 yrs.old and was dx'd with transverse about 16 yrs ago. It started out like she was having a heart attack. Her left arm was tingling and in pain. She lost feeling from her chest down. Her left arm and fingers are severely degenerated. Her legs and feet tingle and feel like they are on fire. She has muscle spasms and tends to fall. She has alot of weakness. She exercises daily and i do some physical therapy on her legs. It affected her bladder and bowels. She has high chol. and was on meds but now has stopped taking those because of the muscle weakness. She has such a terrible time. All tests came back normal so they gave her a name (transversemylitis). This may somehow be in the polio family. Although they said she didn't have polio some of the symptoms are so much alike. I sympathize with all who have these conditions. Watching my mom in pain is just terrible. My dad was very abusive to my mother and maybe the stress caused from working 12 hrs a day in a sewing factory and then coming home and dealing with the pressures of my father may have triggered this condition. I would love to chat with anyone with similar symptoms. Together we can all get through these hard times. Everyone needs someone to talk to and sometimes support is the best will for us to overcome all our tragedies.
Love to all,
Missy

 
Old 05-15-2007, 05:41 PM   #10
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Re: How would you know the difference from PPS and other Illnesses?

Missy - Hi, so sorry to hear about your mom... She never had a history of Polio? I have PPS, and the way to get dx'd is by ruling out some other illnesses/diseases. Definitely go to a doctor that knows Polio and knows PPS.. I feel for her the pain, stay with her and help her.

I hope she has a good doctor and if there is anything I can do I am here- Just know she is not alone and I have her in my prayers.

PPS is also so similiar to FMS, CFS and Me- it is amazing.

Bless you and Mom Janet Polio Survivor( Now trying to learn to live with PPS)

 
Old 05-16-2007, 05:32 AM   #11
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Re: How would you know the difference from PPS and other Illnesses?

Thank you for the post. Mom has seen a couple of neurologist in the Bristol Va/Tn area and they say there is nothing they can do. They did however rule out everything and told her she had transversemylitis. She used to work in a sewing factory for years and they had been receiving shipments from El Salvador. The only other test they didn't do was a chemical test. We aren't sure if she may have had an allergic reaction that triggered her condition or if stress had a role in it. But she did however have an aunt that had polio. The body is such a mystery. She walks with a cane and gets around good considering her condition. What are your symptoms? I am new on the board but I am so glad you replied to my post. Transversemylitis is in the Polio family so maybe the drs are right on this. We live in a small section of Southwest Virginia so our drs are hard to come by. The board says you are from NY. How is it there and how are you coping with your illness? Do you have a lot of support from family?

 
Old 05-17-2007, 07:16 PM   #12
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Re: How would you know the difference from PPS and other Illnesses?

Hi, I do live in NYS- the weather of course plays a factor. I have the severe fatigue along with some muscle atrophy in my left quad. I am now in a brace on my left leg and loftstrand crutches.

How do you cope- one day at a time is all I can do. But grateful it is not a death sentence. Just have to keep that stiff upper lip and I do get support from my family, but they still are having a hard time because of my limitations. In time I will need to get into a power chair and that is alright, as long as it gets me out and about more than I can do now...

Thanks for asking- I pray everyday and also am on a family support group with PPS. Janet

 
Old 05-18-2007, 07:33 AM   #13
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Re: How would you know the difference from PPS and other Illnesses?

Hi Janet- I'm glad you have support. Hopefully someday there is going to be a cure for all these illnesses. I pray everyday that something new comes up to treat my moms tm. She is such a good person and it seems like things like this happen to all the good people of the world. My dad was so mean to her even after her illness struck. I always wonder why he is still walking around like he never had us as a family. He is healthy and strong but also addicted to pain meds. I haven't spoken to him in a little over 3 yrs. I blame most of moms illness on him. Stress can do crazy things to a body and the immune system. Once it starts shutting down there is nothing you can do. You sound like a very caring person and I am so sorry you have to endure what you have been through. If there is anytime you ever need someone to talk to I am here for you. If you want tell me more about yourself and how your illness started? Missy

 
Old 05-20-2007, 08:55 AM   #14
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Re: How would you know the difference from PPS and other Illnesses?

Missy

thank you for your concerns- I will add your Mom to my prayer list. You are so right when it comes to stress. Everyone has some sort of 'stress' in their lives but when it starts taking over your life it can really do alot of damage- Emotional 'stress' is the #2 that can cause PPS in Polio Survivors- unfortunately It hit me.

But if I listen to my body 'now' and pace, rest and ask for help hopefully I can plateau and not lose more muscle and strength. I went to the best of the best Dr. in my eyes and really am thankful I could make this trip. Dr. Bruno has researched and spent over 20 years of his life dedicating himself to PPS and Polio Survivors- also he is an expert on Fibromylgia, Chronic Fatigue and other neurological chronic illnesses.

There are days when I miss doing alot of what I did, working being able to walk through malls, or just walking across our land. But It is not the end of the world and I thank God. I know I will need to get a Power Chair, I am looking to be able to get around more and enjoy life.

As far as the stress - well I always pushed myself and forgot I even had Polio when I was 4. Lived normal and wanted to make everyone happy and always help... That is a 'Polio Survivors' way. The stress really hit me a few years ago when we found out my husband needed an organ transplant, he could not work went on SSD- and I tried to do it all- working, taking him to doctors- doing all work around the house- I guess I just pushed myself totally to the limit and finally had that melt down. But we keep on and are thankful for what we have.... evereyday

Hugs to you(sorry so long) Janet May I add if it weren't for the other 'polio survivors I had found and their support, I don't know what I would have done

 
Old 05-21-2007, 06:47 PM   #15
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Re: How would you know the difference from PPS and other Illnesses?

Janet,
I am sorry to hear about your husband. What was wrong? (I don't mean to pry) I couldn't imagine what you have been through all your life. I tell my mom all the time I don't know how she raised 3 kids, work and deal with my dad's abuse. I guess when it comes down to it we all struggle and survive when we have to. I always try to think that things happen for a reason. If my mom had left my dad yrs ago she may not be here with me today. but at least she's here and in the best condition that her TM will let her be in. Like I said before I hate that things like that happen to good people. I hope your husband is doing well and I hope that things with you get better. During my daily ventures I think of you often and all the other people out there that are struggling. You and my mom are truly an inspiration. Remember if you ever need to talk I am only a few clicks away.
Love to you and your husband,
Missy

 
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