New on the block
AnonymousJune 8, 2006 at 10:09 pm
It scares me to do this. How will I handle it if I get answers from people who really believe. I look a lot younger and healthier than others so it’s hard to not participate in activities others expect of me.
I got my Dx from Scripps quite a while ago. I got better and kind of forgot about it. Now it’s back stronger and meaner than ever.
Patricia:eek:[FONT=”Comic Sans MS”][/FONT]
AnonymousJune 9, 2006 at 12:56 am
Many people have CIDP in a manageable form. I am happy for you. Those returning relapses can be more difficult each time, or you may manage them easily. CIDP is so different for us all.
One thing that is true however, is that fatigue and stress can aggravate your symptoms. The more nerves that demyelinate is a particular muscle group, the more susceptible you are to fatigue. If you over-do it, recovery will be slower. I try to learn the signs of fatigue in me, and then don’t cross the line. If I over do it, I suffer quite a bit, so I avoid it at all costs. Just pay attention to your energy levels.
As far as what others think, don’t try to do more just because others think you can handle it. They don’t have to suffer when your symptoms return. Do what you can and then stop, apologize if necessary and go on. Your health is so much more important to you.
I hope things go well for you. Welcome to the forum.
AnonymousJune 9, 2006 at 7:39 am
Welcome to this group. You will find many than can answer question from personal experience. I have found that to be very helpful. Enjoy your voyage on the gbsfi forums.
Were you diagnosed for GBS or CIDP?
Many people see those who have “invisible” afflictions as being normal. “They should be able to do the same things I do.” What is even worse in many cases is the person can not understand why they get tired so easy. A solution is to work harder to get back in shape. You may have heard the concept “No pain no gain.” This process can increase residual symptoms or even worse bring on a relapse. Recovery from this type of “get back in shape program” will take time. Many including myself have learned to listen to body signals and do things within those limits.
Take care and be well.
AnonymousJune 9, 2006 at 12:38 pm
Thank you both for your kind comments. I got my Dx in 1987, 2 years after my first experiance. I was boiling some quart bottles of fruit. Boiling. So…I dipped my hand into the boiling water, pulled one out and looked at my hand. Bad Idea, I thought. So I put it back, dipping my hand again. No pain. Just amazement that I could do that.
Doctor sent me to a neurologist. He did a very complete battery of tests. Dx: sensory neuropathy. Later, my doctor suggested I get a second opinion: periferal neuropathy. Sent me to Scripps in San Diego. Dx: acquired idiopathic inflammatory neuropathy. Then I had lymphoma, together with surgery, chemo, radiation. Cured.
So about 5 years ago, a physiatrist dx FMS, CPS, Migraine, GERD IBS RLS. Then I moved back to California, and dx was CIPD. And that I didn’t present with any set of symptoms any Dr. could recognize.
Then I had my stroke 6 months ago so added more stuff.
I was getting better but one morning I woke up and could hardly move. My home PT came and since I couldn’t stand with my walker, step, she called an ambulance and I sped off to the hospital. After 3 or 4 hours I was better (for me)
and I was sent home in a taxi.
Everyone here is telling me to get more exercize. During all that previous stuff, I was caring for my husband with Alzheimers. I have been completely worn out.
With great thanks.
AnonymousJune 10, 2006 at 10:57 am
At night, in deep darkness, I cannot stand. My body does not know which way is up if can’t see the floor (or whatever I am standing on.) I DO see walls, furniture, bushes where there is really nothing. I tend to grab hold of whatever is near to avoid falling down. But when I see these objects (I see them beautifully traced with geometric designes),I get hold of nothing and fall, or bump into somthing that IS there and get badly bruised.:confused:
My pupils do not react to light or dark. My legs have no reflexes and my elbow reflexes nearly jump out of me.
June 10, 2006 at 7:09 pm
Not knowing where are limbs are is not uncommon. If I don’t look down when I walk, I will definetly fall.
And as far as looking okay…I hear that a lot. When I couldn’t walk after the CIDP set in after the birth of my youngest daughter, all I heard from people was how great I looked following a pregnancy. Never mind that I couldn’t walk, hold my daughter, etc. It was all in appearance with people. I wanted to scream, “Do you want to see my nerves as proof???!!!???”.
I also noticed when I wear my AFOs, people are much more considerate in not running me over in the parking lot, opening doors, etc. However, if I am out without them, I have been almost run over twice at Sam’s Club for not crossing the lot fast enough and have had countless doors slammed in my face.
It has all taught me to be patient with all of humanity. Just because we don’t wear a sign around our necks stating our disabilty does not mean that we don’t have one. I get the ‘look’ if I park in a handy spot at Sam’s but being closer to the cart returns, I park there now anyway for safety sakes.
I hope your relapes are few and far between and that your burden lessens. caring for a loved one on top of CIDP must be hard. Take care and keep your chin up!
AnonymousJune 10, 2006 at 8:44 pm
I definitly think vaccines are at risk from my own experience with them. If they eat your nerves away, that is worse than the off chance you will get one of those diseases. DPT (Diptheria, Whooping cough and Tetanus) is what I got when I had a puncture wound or a broken bone. ( I guess tetanus would be worse.)
I haven’t tried GBS yet, and hope I can sidestep it. I am trying to look up instead of down. How can I change that habit? I am used to looking down and holding it in. Now I hope this forum can get me back up again.
June 10, 2006 at 9:16 pm
I read something once that brought tears to my eyes and helped me…
keep your chin up – it’s easier to see heaven that way:)
I know after being diagnosed, I made a list about 6 months into treatment listing all the postive aspects of CIDP
Besides learning patience (something I always had struggled with), I learned not to judge by outward appearance (see above post!) and that perhaps some things really do happen for a reason.
Had I not gotten CIDP, I may have finished up my teaching degree and began at a school. Or continued in engineering and worked endless hours being too exhausted at night to be with my family.
Now because of my condition, I don’t drive much so I am truly a stay at home mom. I also homeschool which has given me an oppurtunity to be with my children that I don’t know if I would have persued prior to CIDP.
See if you can take on the Pollyanna attitude and make a list of things to be glad about. It may seem short at first but I’m willing to bet you can add as you go!
AnonymousJune 13, 2006 at 5:25 pm
[QUOTE=badmommy]See if you can take on the Pollyanna attitude and make a list of things to be glad about. [/QUOTE]
I like your attitude looking at all the positive aspects of your CIDP. Mine started late in life only after I retired at age 67. I am thankful for this reading the many posts from people much, much younger. My wife and I joined the Peace Corps in Thailand in 2001. We received a whole lot of vaccinations and shortly after that my first symptoms started. We had to quit Peace Corps only after a few months because my wife had an accident, but a year later we returned for two years to teach Burmese refugees.
My variant of CIDP has been progressing since then and is getting worse every year without any effective treatment so far. IVIG isn’t doing much and Prednisone was a disaster.
This isn’t Pollyanna but just a plain and simple positive attitude: If I had a choice, I still wouldn’t trade the greatest adventure of my life, the experience in Southeast Asia for being free of this strange disease.
June 14, 2006 at 7:37 am
I understand about the people who think you look fine, I can’t drive anymore either so my poor mom gets most of the abuse when we park in handicap parking, bless her heart. I’m 43 and she’s in her late 60s, they always look to her first because of her age. To keep some of my independance I take a cab early in the mornings when the store first opens so I don’t have to deal with pushing a cart in a crowded store. I plan any family gatherings by napping first and making use of any bedroom at the gathering when I’m tired out. Most of my time is now spent with people who love me and who try to understand my limitation. It can be a rough road but as my mom says God never gives us more than we can handle.
AnonymousJune 16, 2006 at 9:01 pm
6 months ago right after my mild stroke, I had a strange attack (or whatever) and could hardly move at all. I was zipped off to the hospital and was better (for me) after 6 hours or so.
Now, I am having another one of those. I feel that my muscles are numb and am afraid I can’t stand or walk; I feel STRANGE. Almost like limbs going to sleep, almost. Fingers feel stiff and numb, like they used to when they were very cold. But they are not. I was worried today so much that I got out my walker. I felt the same as that previous mentioned above. I can type, cannot write, have trouble talking. And extreme fatigue.
Does that seem familiar to anyone? Or am I having a stroke again. I felt this way too, then. My doctor has quit his practice and gone away. So I have a new one that I talked with about 10 minutes. He doesn’t know me. I don’t want to go to the hospital for fear they will send me home in a cab, like they did the first time.
AnonymousJune 16, 2006 at 11:36 pm
I hope you are doing ok. I think when it comes to something like the symptoms your having and your history it is best to go and get it checked out right away at the ER. Better to be safe when it comes to that stuff. My thoughts and prayers are with you.
AnonymousJune 17, 2006 at 9:06 pm
About the Lime disease. I know a lady with M S who has been told that it may be Lime disease. Your husband needs a good neurologist and some testing and M R I. If you don’t already have a Neuro. start with a teaching hospital. They see these strange diseases more often than local neuros do. You would have a better chance of an accurate diagnosis.
God bless both of you. Mary Ann
AnonymousJune 19, 2006 at 2:25 pm
I am working on the Pollyanna thing; it is probably a good thing. I only get depressed when I complain. I might as well make that attack on my depression here.
Thanks for the good support and understanding. I will try to get rid of the negative prospects I linger on and maybe start listing some positive ones.
AnonymousJune 20, 2006 at 12:59 am
It is easy to vent your frustrations here. I can’t get past a problem I am having until I release it. Releasing it for me means talking it out, sometimes listening to extra loud music will pound away those frustratons. Whatever it is, the worst thing for me is to hold on to it and let it eat at me.
Some people deal with adversity differently. My wife holds it in and then explodes from time to time. But her Daddy did it that way as well. My youngest son wears everything on his shirtsleeve, my oldest son holds it in some. My daughter tells us to leave her alone. (We still try real hard to stay involved.)
So if you need to get it out, get it out here. Sometimes we might even be able to help.
Take care cyber friend
AnonymousJune 26, 2006 at 6:45 am
Dear Patricia ANN!
There’s been a lot of posts on your thread, so I may be saying something that’s been said or asked before.
First of all, so sorry to hear about your condition. I really understand your situation, even if I can’t remember having had such a hard time as you obviously have had from time to time.
Do I remember correctly that you said you never had any treatment? Do you see a neurologist at all? Do you have much pain, or are the motoric difficulties the worst? There might be medication that will help, you know
You mention vaccine as a possible trigger of your CIDP, but in many, many cases, stress, especially if it’s over a longer period of time (in your case 10 years!?), plays a major part in triggering CIDP – or in my case re-diagnosed PDN. For me, knowing as much as possible about why and how my illnees affects me, has been a great help in handling my fate.
Hope you are as well as possible at the moment!:)
If you feel like asking me anything – please do!
AnonymousJune 26, 2006 at 10:16 am
I remember getting the “disabled placard” for my car. The gal behind the desk said ~ “Remember this, others will look at you and perhaps be rude, but, you know why you have this. Your doctor wouldn’t have given it to you if you didn’t need it. Be strong!”. How many times I have used that reminder in my head!! Welcome to our caring “family”.
AnonymousJune 26, 2006 at 1:36 pm
I was told by my neuro that my neck xrays showed slippage in my C6 and C7 vertebrae. He suggested I might want fusion. That terrified me hideously–I pictured myself not able to turn my head. to I am now going to look into it. I have an appointment toward the end of August. I have heard from people that they had fusion and their daily and nightly pain, like I have, has gone away.
So–here I go.:eek:
AnonymousJuly 4, 2006 at 9:08 pm
Hello all of you.
I have seen 4 neurologists. 3 in the ’80s. Then in Scripps to see a super-neurologist. Got the dx. I don’t think they had treatment then. He sent me a getle letter, telling me I am neurologicaly well. Except for my increasing numbness, my sensory equipment, my lack of jerks in my knees and and my ankles, my adies pupils, my migraine, and my “acquired” idiopathic inflammatory neuropathy. So everything is just fine.:rolleyes:
Now that I am 73 all these treatments are not really advisable.. I get neurontin, darvocet, celebrex, maxalt, nexium, for my symptoms: daily migraines, GERD, arthritis, whatever. And they help. The pharmacy’s computer is set up for finding non-compatable meds. If there is a problem a pharmacist talks to me.
Thank you for all your advice and support and comfort. I just got through a family reunion with all my 4 children here, sleeping outside in tents, on my deck on my den floor, in my spare bedroom. 4 children, 3 spouses, 16 grandchildren, 2 ggrandchildren. Some stayed at my nearest sons house. They care a lot but DON’T HAVE A CLUE. My nearby son mostly does. His wife is a nurse and talks to me like a nurse, in that firm voice like you sometimes get to hear in the hospital. She is smiling and nice to me when my son is present, is like the formentioned nurse when he is not. She sends me nasty sarcastic emails. When I moved here so I could be by one of my children she sent me a long long email explaining that she didn’t want me here and would not have time or energy to be my friend. She is good at the above mentioned talents.:rolleyes: I don’t want to hurt the marriage of my good son so I put up with it and be pleasant to her wheather is or is not present. I can delete the emails. If I do not I might see them again accidentally and I don’t like to be angry.
Mostly they are supportive. None of them have a clue. But they are loving and try to help any task I am doing, and even take over the job, try to clean up, (and I am relieved when they g off on a backpack trip.)
Their first full day here my closest son organized a work 4 hours–cleaning my weed-covered bank, and building a rock covered path out into the treess all around it , and planted flower all around it. SO I AM THANKFULL FOR THEM AND LOVE THEM MORE every time I see them. God is so good to me. I’ll be a while cleaning up but it was worth it. My son-in-law thinks I’m lazy. 😡 Oh well–they live in Alaska where everyone is tough tough tough so I don’t have to hear him criticize me much. (He’s good to my daughter.)
That daughter was here and we talked about my cidp. And matched symptoms. She surely has it. I gave her the method to get on web pages, and they link to this forum. I am so sorry. So sorry. I love her so much.
Back to business. Yes, I am venting. I have a lot to vent. Getting worse, legs getting rubbery, I can’t squat down to get in a family picture–my son helps, can’t get back up, they practically have to lift my up by my arms. I have scrapes I have no idea how I got, almost no feeling at all on my limbs. Great kids. Now I take a lap or 2 around the pathway they all made for med they are SO beautful. Wish I could smell their fragance. That went away in ’70s after my huge accident.
My hands shake (from my stroke) so I sit in my chair and practice piano excercises to retrain them. They’re a lot better now. I still have to concentrate on swallowing or I get a lot stuck in my throat and then have to try to undo the swallow. 😮
Thanks for listening. I can’t vent like this to my family and.
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