numbness and CIDP question

    • Anonymous
      May 12, 2009 at 8:09 pm

      Does numbness come and go or should i be worried. I walked a mile on saturday and can not seem to recover. It was at the GBS/CIDP walk. the miracle mile. took me an hour and a half. I was the last to finish but I finished.
      I am tired and now my hands and feet are getting numb. It is worse this evening than it was this morning. My mom says it is all in my head, but it is not.Recently diagnosed CIDP from GBS. Not sure what to expect. I dont see my doctor for awhile.

    • May 12, 2009 at 8:26 pm

      Yes, the symptoms can be worse after overdoing it. Sometimes it takes Kevin a good week to recover. Watch it carefully if it does not get better. Are You getting ivig yet?
      Dawn Kevies mom

    • Anonymous
      May 12, 2009 at 8:28 pm

      I’m no expert, but I’ll just offer this — you did a lot of walking on Saturday and now your body is talking back. Rest – Rest – Rest! You need it!

      Hugs from Iowa — I hope you feel better tomorrow!!

    • Anonymous
      May 13, 2009 at 10:50 am

      not getting ivig dr has not mentioned it.

    • May 13, 2009 at 1:33 pm

      If you have cidp per doc you NEED ivig or you will get worse. Go to a different doc without your mom, start fresh!!! what state do you live in? Has your mom been more accepting of the need for pain meds yet? Good luck.
      Dawn Kevies mom

    • Anonymous
      May 13, 2009 at 3:53 pm

      I agree with Dawn! But yesterday I did alot of walking down long hallways without using anything and today I am paying for it too! Every muscle in my legs today feel like jello! Been resting today doing only mild stuff! Aggrivating having this mess! Really is! Might pay to get checked out if you don’t see it getting better! Hugs
      Linda H

    • Anonymous
      May 14, 2009 at 11:41 am

      jojo, I agree, with CIDP you NEED IVIG. Without it you will get worse, more numbness and get weak. Try to find a good Neurologist. Also, if you overdo it with CIDP your body will let you know. It takes time to recover when you overdo it and without the IVIG it may take even longer. Good luck to you and good job for the walk you did and the determination to finish.
      Clare in Michigan

    • Anonymous
      May 16, 2009 at 8:42 pm

      [SIZE=”4″]My numbness comes on strong when I do things like walking & working out at the gym. It may take a day or so to calm, but I know the nerves are firing. IVIG is not the answer. IVIG made my CIDP more aggresive. My doctors said”that” numbness is good. Things are happening.[/SIZE]

    • Anonymous
      May 17, 2009 at 5:23 pm

      it is getting worse instead of better. Called my neuro wanted to do a lp last week. I couldnt decide. Now I agree and cant get a hold of my doctor. Have physical therapy tomorrow at 830am. Cant really do much, then i will begin to get a hold of my doctor.No driving until talk to neuro kind of frustrating my mom.

    • Anonymous
      May 17, 2009 at 11:13 pm

      [SIZE=”4″]If the numbness is getting that bad, then it may not be the repaired nerves firing. Definitly get ahold of the nuero. If you can’t by tomorrow night & it keeps getting worse, try an emergency room. One bad thing about CIDP is relapses. When I get a flair up, I have to increase the steroids. If I catch it in time, no biggie. I ween myself back down. If I don’t, I go see the doc. Good luck.[/SIZE]

    • Anonymous
      May 18, 2009 at 12:17 pm


      If you feel you are getting worse, you need checked out. There are different treatment regimens that work better for some than others. For me, IVIG was not that effective, but I am a minority in that regard.

      As far as what you do and how it affects you, here is some food for thought:

      CIDP is a demyelinating disease. Muscular nerves have myelin, and so do sensory ones. Think about overexertion this way, if you have 25% muscle loss then 75% of the muscle is doing 100% of the work. You will reach an exhaustion point sooner, and it will be deeper than before you had CIDP. Kind of the same with sensory, the more you stress the system, the more it “kicks back”.

      I pray for your recovery and hope you are not down for a long time.

      Dick S

    • Anonymous
      May 19, 2009 at 12:37 pm

      I was diagnosed last August with CIDP after a very sudden episode of pain one evening. They thought it was GB but diagnosed within a few short weeks with CIDP. Had never heard of it till then. I was given IVIGs at first but was sent home getting outpatient Solumedrol IVs. I also take Neurontin and must admit that I have done pretty good. I have regained most useage of feet, legs and hands so I am happy with that but I agree about the pain. If I do too much in one day then I have pain and burning in feet for sure and sometimes my rib/back area. I also was put on Cymbalta which upset me at first (as I am easy going )till research told me that it also works in conjunction with Neurontin for the pain and discomfort. I was wondering if CIDP can affect joints. I have read and read and cannot find anything on this. I have severe pain in both thumb joint which has come about since this diagnosis. Have any of you heard of this or experience something such as this? Maybe it is just my old age 🙂 Have a blessed day everyone.

    • Anonymous
      May 19, 2009 at 12:40 pm

      I also noted that they have me listed as a junior member on this forum. Not sure why but thank you !

    • Anonymous
      May 19, 2009 at 7:49 pm

      getting LP done tomorrow to see if GBS is back. Dr still has not sard antyhing about ivig.

    • Anonymous
      May 19, 2009 at 8:31 pm

      Hi JoJo! Well at least that is a start. Once the results are in from the LP they might be able to tell what is happening and you might end up getting better! Will keep you in my thoughts! Keep us posted on what happens!
      Linda H

    • Anonymous
      May 20, 2009 at 11:53 pm

      [QUOTE=Gammy5]I also noted that they have me listed as a junior member on this forum. Not sure why but thank you ![/QUOTE]

      [SIZE=”4″]Just a little prize you get for contracting this very rare disease.[/SIZE]

    • Anonymous
      May 21, 2009 at 6:43 pm


      Do not focus exclusively on IVIG. IVIG is just one of a number of first-line treatments for CIDP. As Dick mentioned, it works well for some and not so well for others. Your Neurologist will work with you to decide what treatment regimen you should be on. Plasma exchange (Pheresis), steroids, and other treatments are often used to stem the tide of negative neurological activity. It can take time to find the right one or the right combination, so patience is warranted. That can be hard when your body is is not working and getting worse.

      Oh, and don’t worry about the “Junior Member” thing. It is just an automatic web-site tag that counts how many posts you have contributed to. I’ve been on this forum since 2003, but they reset all of the counters recently and now I’m a junior member again.


    • Anonymous
      May 23, 2009 at 1:50 pm

      still having numbness and fatigue. Had a lumbar puncture to see if gbs has returned. wont get results until wednesday.d what medications do you take for CIDP. I am still taking the same ones as before my CIDP diagnosis.It doesnt seem like my neuro wants to be very aggressive.

    • Anonymous
      May 23, 2009 at 5:38 pm

      after you get your dx, can you tell us how your docs know you have CIDP or GBS.
      I found it very strange, because there is no way to have both.
      GBS is acute, you quikly get the paralysis and get in intensive care for ventilation, CIDP on the other hand is slowly progressive and never need ventilatiom.

      Good luck, Pablo

    • Anonymous
      May 23, 2009 at 8:14 pm

      Many people go from gbs to cidp. Not all gbs patients are on a ventilator, and some cidp patients do go on a vent as it progresses. It all depends on the type they have and what is all affected.
      Be your advocate with your dr. Don’t just let him/her decide the treatment route-you get a say also! after all its your body! ivig, iv steroids, steroid bursts, plasma exchange are just a few treatments that have good results. ivig and pp are equall at 70% effective. Its just a matter of finding what works well for you, how you feel it works-not what others say or tests show-its how you feel thats important. Keep a journal, it will come in handy for you in the future.
      I didn’t get ivig until my 2nd paralysis hospital stay, it did ok until the aseptic menigitis-no more ivig for me. My last paralysis hospital stay I was treated with MEGA dose iv steroids and did very well. I’m on the end of another non hospital relapse and the steroid burst is taking care of it this time again. Its just a try it and learn from thing when it comes to treatments. Keep us updated Hun!!!! Take care!!

    • Anonymous
      May 24, 2009 at 7:51 pm

      still patiently and impatiently waiting until wednesday to talk to my doctor. My mom has me walking around without my AFO and a walker in the house. Makes me very uneasy. She had me at the movies today and church and breakfast(it is my sisters birthday) I am really tired and tingling. Wednesday is the day i can talk to dr but it also happens to be my 40th birthday. So it will be an interesting day to say the least.

    • Anonymous
      May 24, 2009 at 8:26 pm

      Steroids are the firstline of defense, but theDiagnosis SHOULDbe confirmed by the LP (rest a cople days after- SERIOUSLY)

      Anyway, IvIg is the next Course ofAttack- Honest, ITworks in a major percentage BUT, Like Jersey Mike0 it made mine worse, and sterids should be watched, carefully, also.

      ANDa Mile walkis serious, gor a CIDP’er- I used to drive 200 miles a day, at times and remember 20 miles a day on a Bike. You gottabe real careful tostrike a balance- exercise to keep strong, DO NOT OVERDO, OR, THE DISEASE GETS STRONGER- It’s tough- I deal w the balancing act, porly, myself
      Wok-a-holic-Porch Monkey;-) (No, not a racial slur- I cain’t Work!)

    • Anonymous
      May 25, 2009 at 9:52 am

      I did get IVIG (for a 1 1/2 year), but it only made my numbness go away but not the tingling, drop foot or made my limbs work any better. The IVIG wore off after having it in 6 years now the numbness is back. My neurologist was very aggressive with the IVIG I had it every month for 5 days straight (500mg a day). I hope that your doctor does look into this because it does give some relief. Unfortunately there is no cure as of yet for CIDP and it is very aggressive and progressive for me. Please rest and do [U]not[/U] overdue yourself. Take it from me I did and now after having this for 12 years now I am paying the price.

      Chin-up always and always laugh and always always look for tomorrow.
      hugs to you

    • Anonymous
      May 29, 2009 at 4:14 pm

      had the LP done still no answer from the doctorI go to see him monday i guess we will talk about treatment then. what do you take for CIDP. WE hav e not changed my meds either. I take lyrica but that is it.I am very frustrated. the numbness is getting worse.N ow I really feel it in my thighs. My mom just signed me up for the YMCA she thinks it is inactivity.I dont know what to think

    • Anonymous
      May 30, 2009 at 11:49 pm


      you don’t bounce from a CIDP diagnosis to a GBS diagnosis, back and forth. Once the neuropathy has exceeded two months or so of “active” phase, it becomes CiDP. The first word being “Chronic”.

      With CIDP there are definitely times when the neuropathy is more active, or possibly less active. A Lumbar Puncture would indicate a level of activity, but is so invasive, and once the diagnosis is made another LP really serves no purpose.

      A neuro can tell if you are relapsing by your symptoms and adjust your treatment accordingly.

      As you have said previously, you have been diagnosed with CIDP. If it is getting worser quicker, you are probably having a relapse. It means that the immune system is mounting a larger attack on your myelin. You need to pay attention to your body and what is happening. The signs of what is going on can be early signals if it happens again. MOst CIDPers have a relapse/remitting cycle. You try to get aggressive treatment prior to a relapse to mitigate the severity. So the best thing you can do for your Doc is to pay attention to what is happening to you. What hurts, how bad? What goes numb first? what second? What function do you lose first, then what? All of this will help your neuro.

      As far as inactivity. Each one of us has abilities and disabilities. Each one of us can do some things, and cannot do others. If you do nothing, you will lose functionality. If you do too much, you will suffer from fatigue (possibly). The trick is to learn to do what you can, and to avoid doing what you cannot.

      Take care.

      Dick S

    • Anonymous
      May 31, 2009 at 7:05 pm

      still havent gotten the results of my LP see the doctor tomorrow. Numbness is still increasing. and I am exhausted. Cant seem to stay awake.

    • Anonymous
      May 31, 2009 at 11:00 pm

      Remember that the results of the LP are only an indicator. One key to the puzzle. Don’t put so much pressure on this one test to provide alll the answers you need.

      Diagnosis is tough, clarity is tough, but a good treatment regimen works wonders.

      Good luck, I will be thinking of you.

      Dick S

    • Anonymous
      June 1, 2009 at 8:13 am

      Hi Jo Jo! Don’t over push yourself right now and just tell your mom that you are having a very very bad day and don’t feel good. Hopefully you will get answers soon and start getting treatment. Good luck on Wednesday! Hugs
      Linda H

    • Anonymous
      June 1, 2009 at 9:11 am

      JoJo, I read your posts and all I see is no rest, run, run, run, no rest—and I hear your body yelling at you to REST! You need to defend your body against others who don’t have a clue as to how tired and worn out you are. Nobody can see how you feel, only you can. As Gene would always say “Rest, rest, and more rest.” Rest is the best medicine when it comes to relapses. Its your body’s way of repairing itself. Don’t depend on the lp to tell you its a relapse-5% of us don’t have high results. Trust what your feelings and inner self is screaming at you. Do the research on treatments and tell your dr its time to treat me, lets start with so n so. Give it a chance and if you don’t get the results you want try the next and so forth til you find what is good for you. Take care.

    • Anonymous
      June 2, 2009 at 10:08 pm



    • Anonymous
      June 2, 2009 at 10:40 pm

      Jo Jo! Last week I was doing so good and was so proud of myself. Was doing all kinds of projects to suddenly slam myself into an attack on my nervous system and am paying the price this week! I have been totally unable to do anything at all. Falling asleep on myself and can barely get my arms over my shoulders. My muscles in my legs feel like jelly! Wobbly feeling and can’t keep my balance when standing! Rest my dear friend! Rest! Anybody tries to get you to do anything you tell them you feel horrible and can’t do it! Get that rest! I know! I hate that word rest!

      I really hate that word! Rest to me is a nasty word! I would rather be doing something productive making myself feel like I am being somebody instead of a couch potato! When I get this way I read, watch TV and do something crafty in bed while watching TV.
      But if I had my way! I would be out partying! I would be at the beach, the mountains, water sking, bike riding, swimming and having myself one heck of a shopping spree in the malls that I have trouble walking in.

      I guess it’s best that I am sick huh? My poor husbands bank account along with mine would look sad if I went shopping in a mall store. I can’t walk in a mall! It’s just to much for me! Hugs!

      You get some rest! Please rest! Your only going to do more harm in the long run. Maybe tomorrow will give you answers! Hugs
      Linda H

    • Anonymous
      June 7, 2009 at 5:14 pm

      still not doing treatment boy am i tired mom has me at the y every other day. Dr i see doesnt do IVIG said would need to talk to his partner. Of course i cant get a hold of him to see what they decided. I am exhausted. my mom doesnt understand. THe more i work out the more tired and weak i feel. not to mention the numbness. I think we n eed to sit down with someone and discuss what CIDP is going to mean to me. amy

    • Anonymous
      June 7, 2009 at 7:57 pm

      [SIZE=”4″]STOP NOW!!!! Do not work out if your on your way down!! Save your strenght!! I tryed to stay active & made myself worse. It will shut you down.
      On the way up, start lite workouts. Don’t overdo them or you’ll set yourself back. Don’t try to rush this. It will do what it wants, when it wants. Keep your head up & stay positive. Its going to get worse before it gets better. Remember, I was the worst case Columbia Pres. ever saw. I was dead( 5 years ago today) I was in a wheelchair for over a year. I had to use walker for over 2 years. I now use braces to walk. This takes 6-8 years to do its thing. It may take me 9-10, because of the serverity of mine. I just keep plugging along.[/SIZE]

    • Anonymous
      June 8, 2009 at 3:13 am

      I agree with Jersey Mike! Seems like everytime I try to get active it brings me down and I end up getting sicker! I think I would tell mom to just lets us wait first and see what the doctor says. You keep having your mom pushing you like this and it’s going to make you much sicker than you were before! Take Jersey’s advice!
      Come point blank out and tell your mom that you can’t do it right now! Even if it means an arguement! Tell her NO! Explain to her that it’s hurting you worse and you just can’t do it!
      Be nice at first and just tell her lets wait and talk to the doctor first before we start working out at the Y! If she still insist then get tough and say NO! I wish you my best Jo Jo! Hugs
      Linda H

    • Anonymous
      June 8, 2009 at 7:13 pm

      Worked out at y yesterday. took my shower then went to work today. I did take a nap this afternoon. mom was at work. still no word from doctor. Appearently one partner has to refer me to the other. called today to get him to do that. first dr doesnt do IVIG. but partner does. all i talk to is voicemail. really tingling and numb not to mentioned tired. I just want to be better. I want to have enough energy to get through the day.

    • Anonymous
      June 9, 2009 at 12:46 am

      Hi Jo Jo! Hon! If you don’t stop overpushing yourself, you are going to end up on a death bed! PLEASE TAKE MY ADVICE! This numbness and tingling stuff is not going to go away and is going to end up getting worse! Since you are getting the Voice Mail stuff which I really hate! My best suggestion is to walk into the doctor’s office and ask the receptionist if you can talk with the nurse a minute and let them know what is going on! Tell them you are getting really scared and feel you need to be soon. Real soon! Maybe then you will get somewhere with this doctor! Please read this and take my advice! Your going to get worse if you don’t! I really care about you and hate to see this happening! Even tell your mother right now you concerns and tell her you need help! I think if you sat down with her and explained everything that is going on she might try to help you some! JoJo! You loved in here! We care! We really do! Hugs
      Linda H

    • Anonymous
      June 9, 2009 at 1:53 am


      1.) IVIG is not the only treatment. It is a good one, but not the only one.
      2.) I presume that CIDP is now your “official” diagnosis. If so, please find some online literature, or better yet, show her the booklet you got from the foundation. If you didn’t get a booklet from the foundation, contact them and get one sent to you. It is very clear and concise as to How CIDP works, and WHAT the symptoms are, and how it affects your body.
      3.) make her read the booklet.
      4.) you are 40, that makes your mom about late 50’s early 60’s? The work ethic she grew up with was hard work and determination will get you through anything. Don’t give up, work, work, work. Now I agree that a positive outlook is necessary, and you need to believe in your ability to heal, BUT
      5.) The first word in CIDP is CHRONIC. That means it comes back, and doesn’t go away. It may not be as bad from time to time, or you may get better for a while, but it will come back, and you will have to deal with it again, and again. That part stinks. BUt you have to understand that in order tyo heal.
      6.) Remember that you and your Doctor will work on your CIDP, treatment, and ongoing care. Your parents should be there for support, caring, love and help. Let your folks help at home, and let your Dr. dictate your treatment.

      &.) Everybody has said it. Believe it. If you do too much today, You will pay the piper tomorrow. If you ignore the piper tomorrow, he charges interest and penalties. Eventually you will crash. Stress and over fatigue will aggravate your symptoms. Rest is sometimes 100% better than exercise. (That doesn’t mean that some exercise doesn’t help, it does. In moderation.)

      Everyone has tried to give you good advice. I care about you, or else I wouldn’t write this. If I didn’t care, I wouldn’t take the time, at 2:00 in the morning, to help you. (Actually my pain is bad and I cannot sleep.)

      Please be good to yourself.

      Dick S

    • Anonymous
      June 11, 2009 at 10:27 am

      second dr called doesnt seem to think i am a good candidate for IVIG. Not sure what that means. still working out at y and now physical therap y. Going to see my head therapist tomorrow not dealing so well right now. really frustrated and being tired all the time is not helping my mental well being at all. starting to get cramps in my hands and legs. Mom says eat more banannas. after tomorrow dont have physical therapy for a week because they dont have any openings.oh well. mom is trying to get me to schedule with my traineer at the Y for that week. She is really pushing me hard. will try to get litterature on cidp from foundation, tht is my project for now. Have towork this af ternoon.

    • June 11, 2009 at 2:24 pm


      Find a different neuro! One that will help you get the I.V.I.G. you need! You don’t need a neuro who isn’t helping you!

      Best Wishes,

      Kevin (a.k.a. KHS730)

    • Anonymous
      June 15, 2009 at 4:10 pm

      i guess no treatment for now. dont know what to do. cant get anybody to listen to me. I guess with my mental health issues(i am bipolar)no one is taking me serious. this happened when i got GBS they thought i was psychotic and nothing was wrong medically. Until they stood me up on my feet and i collpsed onto the floor. then they took me seriously. by the time that hppene d it was to late for treatment and i was paralyzed to my eyeballs. Now i have perm. nerve damage in my feet i dont want damge to my hands but they are getting number. i dont know what to do.

    • Anonymous
      June 18, 2009 at 9:26 pm


      Do you see a common thread with the responses to your post? In case you missed it, everyone is telling you to STOP doing the things that are making you feel tired (mainly the [U]exercising and physical therapy[/U]).

      They are trying to tell you [U]from their own experience [/U]that continuing to overdo the physical activity will make you sicker and make your symptoms worse. For whatever reason, your mother doesn’t recognise or agree with this. She’s wrong.

      Everyone else seems to be saying it more politely. Sorry, but I don’t have that much patience or time anymore, so I’m a bit more blunt, but I do really want to help you.

      If you are having trouble getting other doctors to believe you are in trouble because of your bi-polar diagnosis, ask your psychiatrist to help you by contacting the other docs for you. Your psychiatrist can probably help you to get an appointment and treatment.


    • Anonymous
      June 19, 2009 at 10:58 am

      numbness still progressing am resting more but still doing pt. Quit driving altogether for now.(really frustrating my parents as they have to drive me around)will talk to my mom about going to see a different neuro. and will try to get some relief. thanks for all the responses.

    • Anonymous
      June 21, 2009 at 1:35 am

      Sending you a PM message.
      It’s about local neurologists where you live.

    • Anonymous
      June 21, 2009 at 5:27 pm

      my mom has relented and i am going to call Dr tomorrow. pray he can see m e pretty quickly. I have a bad headache today. it could be hormonal. great!
      just a short note thenks for reading. amy

    • Anonymous
      June 22, 2009 at 7:39 pm

      cant get into the new guy until july 22nd. still pretty numb and tingling. I am resting more. I get a nap in now, went back to using my sleep apnea machine. although all it seems to be doing is drying out my sinuses. I am going to use it every other day. my mom is convinced my lack of sleep is what is causing this. Going to the beach with some friends and my mom. Maybe i will get to relax a little. she will go shopping and leave me at the house then i can get a nap in. thanks for all th e replies i have not been ingnoring them i just needed to convince my mom of all of it. m y momis going to california soon she will be gone for 10 days. che will be gone when i go to the neuro so my friend is going to take me. I just want to feel better. I am really feeling it in my hands today. even my physical therapists are saying something now. Defintely no driving. that sucks. my parents hate driving me around. PT and work besides dr appts are the only places i am going right now.

    • Anonymous
      June 23, 2009 at 2:45 am

      Hey Jo Jo! When your mom leaves for California. I would cancel the PT for those 10 days and reschedule when she gets back. I would take a good rest those 10 days while she is gone. Maybe then you will see some improvement. Don’t let anybody use your Bi Polar as being the problem with this numbness and tingling.
      Those 10 days she is gone. Get on the couch and watch TV and do totally nothing! Hope the new Neuro will help you soon. Hugs
      Linda H

    • Anonymous
      June 23, 2009 at 11:29 am


      I have sleep apnea. I use a CPAP. I had the same dry sinus issues, and I got a humidifier that goes in with the machine. I had to adjust the water temp to adjust the humidity coming through the hose, but when I got it right it was quite a difference. I don’t know how bad your sleep apnea is, I can only speak from my experience. My life is so different since my diagnosis and the time I started using the CPAP machine. Mental and physical fatigue, sleeping through the night. All that stuff. I have been CPAP for 12 or 13 years. I know I would be dead otherwise. No doubt about it.

      Off the soapbox now….

      It sounds like you are coming to a point of understanding about your condition. Think of it this way, Your nerves are damaged and need to recover. You have Schwann cells in your body that will try to re-myelinate the nerves and heal them. If you keep on OVER-taxing the system, you cannot heal as quickly. Stress and OVER-exertion are aggravating factors and make things worse. Keeping yourself in the middle ground. balanced, will help the most. Yes, do some exercise, but not too much. Avoid stress. Relax and keep your body “happy”

      I hope things work out for you. remember to make notes about questions for your Dr. appointment, so you can get all the answers to your questions.

      Good luck
      Dick S

    • Anonymous
      June 28, 2009 at 6:26 pm

      still pretty numb. went to the beach with the girls. No beach actually not evena pool. we went down to go shopping and to go out to eat. I am exhuasted. I did ge tto sleep in each day but ia m still tired. Sat and people wathced in stead of shopping. dr called while i was gone going to call tomorrow to see why. i hope it is to get in earlier and not to postpone my appointment. my head therapist called as well. I hope she is not cancelling and is just calling to confirm my appointmrnt,. didnt use my sleep apnea machine while i was gone go back to using it tonight. i guess i have been not so attentive to my condition. I wanted to go to the beach and try to forget my troubles. Sorta did. But now that i am back it is back to reality.I go back to pt then work tomorrow. still not and dad are ging to dc to my older sisters for 4th od july. I decided to stay here. #1 to be able to rest # 2 to give my mom a break. My little sister is going to stay with me at my house.

    • Anonymous
      June 29, 2009 at 1:26 am

      Try to get on the neurologist’s appointment cancellation list.
      That way you may be seen sooner.
      The neurologist has several locations-do your best but be persistent.
      Rest all you can.
      No YMCA. No PT. Stay out of the heat.
      Limit being outside unless in air conditioned car.

    • Anonymous
      June 30, 2009 at 1:26 am

      Good luck with your appointments.

      I’ll be thinking of you.

    • Anonymous
      June 30, 2009 at 12:15 pm

      dr cant see me u ntil the 22nd, still pretty numb. even pt is noticing a change. having incontinence issues a gain. will try to call dr today. to my mom er is not an option just h ave to wait until 22nd

    • Anonymous
      June 30, 2009 at 7:46 pm

      incontinence is getting worse. will try to call dr tomorrow. cant get my mom to see the urgency of my situation, hands are really numb and now i dont know if it is my mind or my body but my chin feels numb. my mom thinks everything going on is because i am laying down more but i am laying down more because of everything going on.

    • Anonymous
      June 30, 2009 at 9:42 pm

      if you get any worst and can’t wait until the 22nd then y ou need to get a friend to take you to the ER if your mom won’t take you. you know your body and how it feels don’t let anyone try to make you feel like you don’t know how you feel. You need rest not PT if you are going down hill. The PT will make you worst if your getting sicker. My son Ryan had to stop PT for a long while when he was going down hill. He is back to it now that he is leveled off but he only goes 2 times a week for a hour for PT and a hour for OT then home for a nap.
      I will be praying for you that you start feeling better. good luck to you!

    • Anonymous
      July 1, 2009 at 12:52 am

      Your appointment is a Wednesday at the neuro’s South Office.
      Please call his main office number and see about any cancellations.
      You should be fitted in if the urgency is realized.
      His Monroe office usually has openings or did some time ago.
      Can your PT call the neuor’s office and explain how important it is for you to be seen pronto?

      Do consider the ER if you get worse.

      Good luck.

    • Anonymous
      July 1, 2009 at 12:49 pm

      got appt with pa for tomorrow dr rao is out of office until next week cant get my mom to listen to me still now she thinks i am doing this because she is going out town for thr 4th. i am looking forward to her going i need a break from both my parents. they are driving me crazy. they just dont believe me when i say something is going on. other people are noticing the changes.

    • Anonymous
      July 2, 2009 at 9:22 am

      Before I get started I just want you to know that I am a blunt person. I am not trying to be mean to you but to help you.

      Ok then?

      You are 40 years old! If you feel your health is declining then GO TO THE ER!

      CALL AN AMBULANCE to come get you!

      You DO NOT need your mother’s permission to do so!

      If you thought you were having a heart attack would you not get help because your mother said no? NO, you would call 911! This is not any different!

      Your disease is progressing. It sounds like it might be attacking your autonomic nervous system. Your autonomic nervous system controls bladder & bowel function, heart rate, digestion, respiration rate, salivation, perspiration, diameter of the pupils, etc.

      YOU NEED TO GET THIS TAKEN CARE OF ASAP before it progresses further!

      You need to take control of YOU! Tell your mother to shove it & GET TO THE HOSPITAL NOW!

      If your mother will not advocate for you then you need to do it for yourself. Only you can help yourself now! Pull your boot straps up, pick up the phone & make the call to get yourself on the road to recovery.

      If you need help being able to do that then maybe your therapist can help you.

      Good luck,

    • Anonymous
      July 2, 2009 at 5:49 pm

      saw the PA at dr rao office. sent me for an MRI. supposed to follow up on the 21st but i think it will be sooner. I know it sounds rediculous to have to get my moms permission but it is easier t han if i dont i reley on myy parents to help me. they have been taking care of me since before GBS. I also am bipolar and have hd a long struggle finding the right meds. I think my mom really hopes it is in my head it would be so much easier to deal with if it were. I was making such good progress now i am going back down hill.

    • Anonymous
      July 2, 2009 at 8:07 pm

      I can’t imagine what its like at 40 to have to rely on your parents for transportation and etc. But JoJo you need to get your self the help you need. I have a friend who is bipolar and he is not a mental case. He takes his meds and he is normal. you would never know he was bipolar unless he didnt take his meds. so stop thinking of yourself as this mental case that no one is going to believe you unless your mom believes y ou. A good neuro who is experienced in CIDP will look at your tests and symptoms and he will believe you and get you IVIG. The neuro’s who won’t help you aren’t good doctors. you need treatment for CIDP or you will get worst.
      So either you need to get help for y our self with neuro’s who know what they are doing or find a new neuro. Your mom needs to read up on CIDP and realize its not in your head the illness is real. Denial is not getting you anywhere its just making you sicker.
      Good luck I hope that your Mom comes around to your side and that you find a neuro who will help you.

    • Anonymous
      July 3, 2009 at 1:00 am

      [SIZE=”4″]I’m 51 & my 75 year old Mom runs me all around. Doctors, therapy, 80 miles 1 way to my place. She also had me picked up & dragged to the ER 6 years ago. She does whatever it takes to make me happy & to keep a clear head. She has been just the opposite of your Mom. As I improve, she’s doing less & I’m doing more. I don’t know where I would’ve been without her.
      I hate to say this, but your mother is going to put you in an early grave if you don’t stop this madness. [/SIZE]

    • Anonymous
      July 3, 2009 at 2:58 pm

      thanks for the posts. My mom is a good person. she just is having a hard time dealing with this. I think that if she pretends nothing is the matter it will go away I know that is not true. She went to my sisters in dc. so it gives both of us a break.

    • Anonymous
      July 3, 2009 at 7:24 pm

      Of course your mom is a good person but she just doesn’t understand what you are going through. No one is saying she’s bad. We’ve seen people here who’s family aren’t supportive at all of them. Your mom supports you…she just doesn’t understand what you are going through.

      Like I said in my last post, you need to advocate for yourself.


    • Anonymous
      July 4, 2009 at 9:41 am

      I will probably check in to see how you are doing, because I care about you. But you need to take care of your own situation and be honest with yourself.

      If you go back to the start of this thread you see a pattern. We give you great advice and you still don’t listen.

      I am not being obnoxious, just true. Everyone here dares deeply about CIDP, and wants to help others avoid problems that we had, or give suggestions for you to improve your situation.

      But You have to help.

      1. Have the GBS/CIDP foundation mail you the booklet about CIDP. They will. No Charge.
      2. Make your mother read it. (You read it first.)
      3. Your mother does not understand CIDP
      4. You do not understand CIDP.
      5. Until you come to grips with this and move past it, you cannot be effective with treatment.
      6. whining does not treat CIDP.

      I care about you and your situation. I wonder if you care about yourself, or if you are playing us for sympathy?

      I am not being mean. Just honest. You can help fix yourself, please try. We all care about you.

    • Anonymous
      July 4, 2009 at 12:09 pm

      i know this needs to be addressed. thats why i went to a new neurologist. I dont understand why he did an mri of my brain i go back to see him this week to find out the results. I have to go through my parents they control my finances . It seems at 40 i should be incontrol but that is not the case. and there isnt enough time and space to go into why. But it haas to do with my bipolar issues and my history. I guess we dont fully understand the CIDP factor. we were so used to dealing with GBS that i guess we need to get more of an understanding of CIDP. Thanks for your response i am going to have my mother read this when she returns from the holiday.

    • Anonymous
      July 4, 2009 at 12:12 pm

      [SIZE=”4″]Well said Dick!!! My feelings exactly!!! If I sat & did nothing, I’d still be in a wheelchair. 5 1/2 years later, I’m back in my apt. & taking care of myself again. Am I 100%? No! But I’m up & around & doing a lot more.[/SIZE]