I would like to have support from everybody to share their symptoms and disabilities. Even though everybody is different, it would help to hear how people started and either got worse or better.
Sometimes I feel so overwhelmed that I don't realize how much progress I have actually made.
Thanks for your help!
Hi my name is John.m. The problem I have is I don’t have health insurance and I can’t get any tests or ive treatments…I take gabapentin and methadone for the pain.thats all they can do.i have pain from my neck all the way to my feet.I just have to deal with it.i get alot of pain in my hipps . I see my Nero once everg six months because I don’t have the money.alot of the time the problem I have is from my hipps down to my legs.the gabapentin helps with the nerve pain.just know your not alone.I thought I was alone with dealling eith this but we’re not.if u need to talk just leave me a messg.
well i am just trying to accept all that has gone on since i was diagnosed jun 2011
i have been getting ivig every 4 weeks for 5 days .i now where braces on my leggs to help my walk better
yet still need the walker ugggggggtgtgt i am feeling so mad and frustrated with this hole thing .
We were packing our moving truck to head from Federal Way, WA back to California where I was raised, when all of a sudden I found I had the flu. The kind were it is coming out both ends. It was bad.
On 12/23/2000 while walking the neighborhood looking at Christmas lights, I started noticing I was having a hard time with my ankles. I felt weird. As the weeks progressed....so did my symptoms. by 12/30/00 I has severe back pain, my legs were getting weak, I heard synthesized sounds when cars drove by, every sound was extreme, my hands and feet were in extreme pain as well. It felt like dry ice was burning me from the inside out. Every time I touched something I felt like I was being stung by millions of bees, and I was having a hard time walking and lifting my arms, although I felt like I had to constantly go, it was hard to go to the bathroom. I would have gone to the doctor, but did not have medical insurance.
On Jan. 2, 2001.... the day I was to start my new job, I got in the shower and could not lift my arms to wash my hair. This was at 8:30 am. I got out and yelled to my boyfriend to get me to the hospital ASAP. By the time he got me to the hospital, my parents were there waiting. I was rushed back where they did an array of tests one being a lumbar….spinal. By 10:30 am I was completely paralyzed. My spinal came back with high protein. I had Guillain-Barre Syndrome. No one in my family had ever heard of it.
I was in the hospital completely paralyzed for 8 days. I had IVIg for 5 days & a plasma exchange. I had a catheter, and I was on oxygen. I had a hard time swallowing, my speech was gone, my breathing was getting worse. There was talk of me being in a rehab facility for 4 months, they were going to put a shunt in my chest ….it was scary.
After 8 days of being in the hospital, I was kicked out due to no medical insurance. I did not qualify for state aid because I was not a legal resident of California yet. I was sent home with month's worth of in home nurse's visits.
My parents took my children in (for a year), bought me a used wheelchair, and a walker, and they started making phone calls to see if they could get me help. Finally, after 1 week of being in extreme pain, and being couch ridden, my dad took me back to the hospital. A woman came in the room with medi-cal papers to fill out so I could emergency state ins.
But....I was sent back home.
Long story short, by Feb, 2001, I had a nurse come to my home to help me 3x a week. No rehab, and no shunt. I started to progress, and regained my walking ability on my own by April. In June of 2001, I regressed. I went to see a neurologist. He did a bunch more testing…. he concluded I has CIDP.
I was finally approved in 2002 for physical, speech and occupational therapy for my GBS (How's that for state insurance? It had already been a year and my GBS was now CIDP…MORANS!).
But, because my parents had my children living with them, I lost my medical insurance through the state, so I only went to physical therapy 1 time. And before my ins. stopped, my neurologist put me on Neurontin, which I quickly stopped due to extreme side effects. Life sucked!! I started to self medicate with alcohol and drugs. Of course they numbed my pain, gave me energy, and helped me, but they also started me down a path of self destruction. It took me 2.5 years to figure out that numbing myself was making my CIDP worse.
Now, 11 years later…..although I have amazing medical insurance these days….I refuse to be treated for something that has no cure. Why? Maybe it is a sense of false hope combined with not wanting to put more drugs into my system,
Yes there are things to help ease the process out there, but from my experience, they only work for awhile. I have learned to deal with the pain on my own, and take each day as it comes. I do take Tylenol 3 for extreme pain, that my doc prescribed, but will not take anything stronger. When I have "Lay Low Days" (like I did this weekend, and this morning) I just kick back and enjoy life. Warm showers work, staying covered with socks, sweat pants, hoodies, and sometimes gloves help. I have learned to become resilient to the pain and have concocted my own coping strategies that work for me.
Because of my bad experience with the doctors in San Diego (I moved back up to the Pacific NW in late 2003) I am afraid of being shut down again. I told myself if things become extreme, I would head to the doctor right away. There have been some close calls, but I just wait them out.
On a daily basis since 2000, I do have the vibration sensations, burning feeling, pins and needles thing going on in my right foot, hand, and face. This past weekend it is my both sides of my body, with all of the above, and weakness in my legs and arms, my speech has been off, and I have had the feeling of urgency to use the bathroom, yet nothing happens. Sleeping has been a pain in my butt, because of the pain.
With the pain and symptoms arising again this weekend, I felt the need to reach out and find people like me. That is when I came across this website. After reading about everyone's journey's, their ordeals, successes, or lack thereof with various treatments, it seems as if the medical community has come a bit farther in understanding CIDP since I was first diagnosed in 2001. With that, I have called my doctor, and asked to be seen so I can weigh my options once again. :)
The overwhelmed feeling comes and goes for me. I have learned to not let it take over , like I did in my past. I took up photography to redirect my thoughts. I look at life as a gift, and am very thankful that I am able to be here...right now....sharing my story with you, as well as learn from others about their experience.
Anyway.....If there are typos in this, I am sorry. Please read between the lines. I had to hurry. I have to go to work for a few hours this morning.
thank you for sharing your story with us. You are an amazing person. Mine started off with encephalomyletis in 2009. But i know i had this crap atleast 2 years earlier. Since the brain/spine infection or whatever i had i have been bedbund but developed new symptoms over a year ago, unknown to me it was this crap. I couldnt lift my arms either, hold my bladder and my breathing was bad. I have been to over 9 E.R's, 4 states 50 docs and 99 percent of them treated me like shit. I went to nursing school and worked for a hospital and let me tell you, EVRYONE falls through this grossly flawed disgusting, money driven healthcare system. We have to fight and fight to get any help. You stay strong hun and know that you arent alone with this ugly disease
Lethargy and chronic back pain keep me from soaring with the eagles.
My first symptom, quite number of years ago, was just fatigue, or lack of energy. I thought maybe that it was just old age, but it got so bad that my doctor thought it might be hypothyroid. But, tests ruled that out, and so nothing was done, and I lived with it. This went on for perhaps five years before any other symptoms showed up.
Then I developed pain, numbness and tingling in my lower legs and feet. This was diagnosed as a pinched nerve, but none of the usual treatments helped.
After about a year of this, my legs started to get weak. When it got to the point that I could barely stand up, I went to see a neurologist, who immediately diagnosed Guillian-Barre (GBS). I was treated with IVIG and got much better, but not totally well.
When the symptoms returned in a few months, my doctor decided I was one of the lucky few who actually have CIDP, rather than GBS. Since then, I have had several relapses. I am now on a regular schedule of IVIG plus Imuran (immune suppressant). This seems to keep me pretty stable.
As far as symptoms today, I still have the pain and numbness in my lower legs and feet, but usually much less than I did initially. (I know it sounds contradictory to have both pain and numbness, but I do...) I am still much weaker than I used to be, but fortunately able to do most ordinary tasks. I am going to the gym on a regular basis in an effort to build up my strength, but progress is very slow.
There are also other symptoms which are much more vague and hard to describe. I am clumsy - for example, have a hard time catching something thrown to me. I tend to drop things a lot, which drives my wife nuts. If I'm not careful, I tend to veer off course when I am walking, and bump into lampposts and such. But if I think about it, and really pay attention, I can do just fine. I have the feeling some times that I am somehow not totally connected to my legs and feet. It's a very odd sensation, hard to describe. Looking back, I think a lot of these vague symptoms had been coming on for years, and I just thought they were a normal part of aging.
Hope this is helpful.
Bill
Hi,
Thank you all so very much for replying! Please keep it going as hopefully it will help to gather more information on the variety of symptoms and disabilities we deal with every day.
I feel I should share my story with you as well. For me everything started in the first week of December of 2010. I also had a flu bug…… I did not spend the time to get a flu shot that year. Every muscle and bone of my body was in massive pain. My right big toe went numb, followed by my right foot falling asleep all the time. I had a hard time bending down or getting up from the ground. My left foot started the same way…..I went to see the local doctor not thinking of anything evil, and he figured I should wait a little to see if things would change or go away. My lower right leg started to go numb. I started to trip over my numb feet. I thought maybe I pinched a nerve or so. I went to see the doctor again, and he thought it might be MS, so I had an expensive MRI of my head. I had to wait to get results for 10 days, because of the holidays. The numbness affected now both lower legs equally. My lower back was in extreme pain and also the area between my shoulders. The nurse finally called and told me that there was nothing wrong with the MRI. She told me to see a Neurologist, and when I ask her whom they referred me to, she just told me we don’t know, and I was left alone without help. I scheduled another appointment with another doctor, because all the neurologists in the next 300 mile radius did not want to see me without a referral. That sure was a big surprise for a person that usually was super healthy and strong. I called my OBGYN the only doctor I would see once a year, to see if she could get me a referral, but even with her referral the appointment was another 6 weeks out. So it took 8 weeks for me from the start of my symptoms to see a neurologist. Now my bud was numb and my upper arms and stomach started to tingle. I was at 8 weeks and still getting worse. Now my chest developed a belt that was choking me and my headaches started just like migraines crawling up the neck and into the middle of my head. The neurologist spent about 10 minutes with me and took a 5 minute 5 point EMG of my right leg. I remembered his smile and telling me, I know to 98% what you got is GBS. He told me he will order a 3 day treatment of ivig with 70 g of gamaguard and within a year I should be back to normal, as if nothing ever happened. I was so happy to hear, that I was going to be ok again. I got the infusions after dealing with a lot of burocracy and I still got worse. For a week after the infusions all I could do is drink orange juice or eat oranges or yoghurt. I could barely breathe and I went from walking with a cane to a walker. My upper arms and my hands started to go numb, my face and tongue too. I was told by the neurologist that it is normal to get worse before better. My 9 year old daughter kept me alive, while my husband was trying to make ends meet. I started to feel better and switched doctors again hoping to finally find a doctor that cared. He went of the GBS diagnosis and ordered PT. PT was too exhausting for me and I learned later that it stopped me from healing. I finally had enough energy to learn online about the difference between GBS and CIDP. I finally got in June into the Mayo Clinic and I knew that I was finally in caring and in professional hands. The Mayo clinic made all the other “5-10 minute doctors” look like that they need to go back to school. I was diagnosed with CIDP after a real EMG and a Spinal Fluid test. I received twice a week 35 g of gamunex c for 7 months and started to gain strength. Now I receive it once a week until July and we hope to decrease it to every two weeks by July. I have no headaches, my face is back. I can whistle music and I can eat normal without pushing the food down like a chipmunk. The belt around my chest is gone. I can crawl in and out of my bath top again, whenever I want. Everything seems to slowly come back. I can type with one finger and it looks like my upper legs gained a lot of strength. In July they want to try braces on me. I am scared they will restrict me more than help. I don’t know enough about braces. My feet don’t seem to drop anymore and I can feel touch sensation, hot and cold on my lower legs again. I am glad it’s finally nice to spend time outside again. I just hope I will be able to use my hands and feel my lower legs to walk again. My joints still hurt every day, but I know at least I can feel them. I have not received any PT since June 2011. I was told to focus my energy on healing. Once the nerves heal the muscles will be there. I use a little peddler to move my knee joints from becoming too stiff and I try to do sit ups for my belly that seems to want to grow due to the lack of exercise. To end on a positive note: “I now know, that I am getting better. I did not get hospitalized and I had my caring family and friends around to help me get better!”
Hi all,
I was very interested to read other stories.My story is very similiar to Uncle Bill.I am guessing I have had it for about 5 years now originally in the feet but progressively through to both legs ,hips and lower back.I have a question though , my lower back mainly becoms a problem when I have overexerted or am tired and it then feels like a dull cold chilling pain which I am not sure is CIDP or may just be aged and fused discx . Any comments.
I am also intrigued by the varying extent and use of IVG. I have been on it for 9 months now but only 500g every 4 weeks. Others seem to be on much more.I was told it would take time to have any effect and I am not sure if it is working or not as my legs and hips have definitely deteriorated further in the last 12 months.,
actually I can still do most things I want to adequately and if I dont overexert I lead a pretty normal life.I have been taking Panadol Osteo for years and maybe that kills the pain .Mine is mainly numbness, loss of balance , tiredness (and bladder). I feel let down by my Specialist but he basically says there is no cure , try this and tell me once every six months how you are going.
My Gp commented that he had seen an article on the Net where some US ??? doctor claimed to have a cure. Any comments?
My symptoms started in october 2011, my right calf and glutes just killed me when I walked. I sought out massage, but by november my lower back was in pain and I walked with a terrible limp. I then sought out a chiropractor thinking I had a buldging disk or a pinched nerve. In december I started to notice it was getting harder to stand and my foot seemed to drag a bit. I started to trip. I bought a cane for work since I was on my feet all night. In december I noticed more, pain in my pelvic area. In January, it was getting harder to climb my stairs, get in my big tub and stand. Pain in back, numbness on my right shin was developing. I was tripping more and more. I got worried this was more than a pinched nerve. Took loa in January to get myself better. My gp conducted mri, xrays and referred me to rehab and pain doc. My mri showed alot of arthritis for my age but no pinched nerves. She ordered 3 -4 weeks of pt. My physical therapist new immediately this was more than just muscular. He tried communicating this with my rehab doc. And she was just ignorinv him. Needless to say I was getting frustrated because by febrary I was walking with a walker. I could no longer climb my steps, I had to get a shower bench, my dad built me a temp ramp. my pain was improving in my back but not in my pelvic. my therapist said to me after three weeks. This is rediculous! Your getting worse every week and I feel im not doing you any good. He said dont wait goback in and make her work you up. I went in and she ordered mri of brain and told me to find a neurologist. I got no help with her. So a friend of mine has a friend who was a neuro surgeon and he ordered an emg. the neurologist that conducted that test on feb. 21, 2012 admitted me in hospital that day and started on rounds of ivig. He knew I had some form of neuropathy. I was worked up with all kinds of test. My spinal tap came back with high protein and on feb. 23,2012 I finally had answer what was wrong. Cidp. I was in hospital for week and rehab for two. I walked out of rehab with walker in march by April I was confined to a wheekchair. I cant lift myself out. My left leg started getting weaker. I was sdmitted sgain in march for more ivig. Now I just go twice a month gor ivig outpatient. I’m worried im not getting enough. My right thumb is now showing signs of weakness. Good news I have no pain numbness, but when I am up for several hours my toes tingle,turn purple and feet swell. Im really hopeful to see people walking, but discouraged now. Everything is a struggle, dressing and just having to transfer so much. I dont sleep well because I becauseup when I have to move my legs.
My syptoms started seven years ago.i noticed when I got off of work my legs would hurt really bad.then the pain went all the way up my body.i thought it was just old age even know I was just 30.then it got worse to the point where I would fall down.if I was on my feet for any amout of time then sat down for any amount of time then got up I would fall back down.my neck hurts alot of time.they put my on imuran and now I can walk good but still have to be on pain meds all the time. I have tryed to go without it but pain was too much.still have problems with nerve pain from neck all the way to my feet.I’m now 38 and getting better.godbless u all.
Thinking back.....I started showing symptoms in 1995. I went to several doctors for numb hands and feet, that were in extreme pain. People don't understand that concept....but it exists. They found nothing. In 1998 I saw a neurologist who thought I might have MS, but I didn't. Even before I got the flu in Nov. 2000, I was sitting in front of the wall heater with it cranked on HIGH to try to make my feet feel better because when they go numb, they turn freezing cold from the inside out with a burning feeling, and pins and needle. It feels like I have dry, crackly, fall leaves stuck between my toes. I tell people my feet have a burning,crunchy bee stinging, freezin' thannnnng going on. The same goes for my hands. Anyway....after reading all the posts today (and last night) I truly feel this started about 6 years prior to me coming down with GBS & then being diagnosed with CIDP in 2001.
I am glad you are getting better :)
McCullough said:
My syptoms started seven years ago.i noticed when I got off of work my legs would hurt really bad.then the pain went all the way up my body.i thought it was just old age even know I was just 30.then it got worse to the point where I would fall down.if I was on my feet for any amout of time then sat down for any amount of time then got up I would fall back down.my neck hurts alot of time.they put my on imuran and now I can walk good but still have to be on pain meds all the time. I have tryed to go without it but pain was too much.still have problems with nerve pain from neck all the way to my feet.I'm now 38 and getting better.godbless u all.
Hello, I am new to the community and only have a few minutes to post. I was diagnosed in December 2007 at age 37 with a sudden onset, although looking back, I realize I had CIDP symptoms for many years. Things the doctors could never find an explanation for. In fall 2007, following a bad sinus infection, I started with burning in hands/feet and muscle weakness in lower body that progressed rapidly along with feeling very ill. I was hospitalized following a spinal tap, and fortunately was diagnosed quickly from there. I have been on prednisone (now a low dose) and IVIG since January 2008. I still suffer mild weakness, fatigue, stiffness and pain, but for the most part it has been manageable and I realize I am very fortunate. Recently have been experiencing some additional weakness/pain that I am seeing my doctor in a couple weeks to discuss. Not sure where we'll go from there. Good luck.
Good day everyone,
I come from Cape Town in South Africa and was diagnosed with CIDP in July 2010. I find it amazing that health care in the US can give so many problems with medical insurance etc. It is a sad indictment of the system in a country that is supposed to be a world leader and even more sad that President Obabma has not been allowed to put his plans into action because you have so many loops to jump through in your country.
A year or so before my diagsnosis I started to have numbness in my feet and I was unable to flex my toes. I was 65 years old at the time so thought it was old age!! Eventually I told my physician about it and he sent me to a neurologist who carried out a nerve conduction test and told me the problem. I had huge doses of IVI for 5 days then every week for 6 weeks then every two weeks for 6 doses then every 4 weeks. I am now down to 24G every 6 weeks which seems to be holding things in place. My symptoms are:
1. Numbness of the feet up to just below the ankles
2. A shake in my right hand that is not always present but does make me clumsy and I drop things a lot and shake most of the time but not enough to stop me from living normally.
3. No reflexes in my arms and/or legs at all.
4. Unable to flex my toes.
5. My balance is suspect.
On reading a lot of the stories on your site I realise just how lucky I am. I have no pain and can live a very ordinary life. I walk up mountains and along beaches (I cannot run) for hours and drive all over the place etc. My worry is of course is that I will slowly get worse.
The Doctors here are excellent and right up to date. They have tried me on azathioprin but I developed a vicious allergy so the IVI is all I am doing at the moment.
My symptoms seem similar to Uncle Bills but probably not as bad.
Very good discussion. Is anyone else from South Africa?
Audrey said:
We were packing our moving truck to head from Federal Way, WA back to California where I was raised, when all of a sudden I found I had the flu. The kind were it is coming out both ends. It was bad.
On 12/23/2000 while walking the neighborhood looking at Christmas lights, I started noticing I was having a hard time with my ankles. I felt weird. As the weeks progressed....so did my symptoms. by 12/30/00 I has severe back pain, my legs were getting weak, I heard synthesized sounds when cars drove by, every sound was extreme, my hands and feet were in extreme pain as well. It felt like dry ice was burning me from the inside out. Every time I touched something I felt like I was being stung by millions of bees, and I was having a hard time walking and lifting my arms, although I felt like I had to constantly go, it was hard to go to the bathroom. I would have gone to the doctor, but did not have medical insurance.
On Jan. 2, 2001.... the day I was to start my new job, I got in the shower and could not lift my arms to wash my hair. This was at 8:30 am. I got out and yelled to my boyfriend to get me to the hospital ASAP. By the time he got me to the hospital, my parents were there waiting. I was rushed back where they did an array of tests one being a lumbar….spinal. By 10:30 am I was completely paralyzed. My spinal came back with high protein. I had Guillain-Barre Syndrome. No one in my family had ever heard of it.
I was in the hospital completely paralyzed for 8 days. I had IVIg for 5 days & a plasma exchange. I had a catheter, and I was on oxygen. I had a hard time swallowing, my speech was gone, my breathing was getting worse. There was talk of me being in a rehab facility for 4 months, they were going to put a shunt in my chest ….it was scary.
After 8 days of being in the hospital, I was kicked out due to no medical insurance. I did not qualify for state aid because I was not a legal resident of California yet. I was sent home with month's worth of in home nurse's visits.
My parents took my children in (for a year), bought me a used wheelchair, and a walker, and they started making phone calls to see if they could get me help. Finally, after 1 week of being in extreme pain, and being couch ridden, my dad took me back to the hospital. A woman came in the room with medi-cal papers to fill out so I could emergency state ins.
But....I was sent back home.
Long story short, by Feb, 2001, I had a nurse come to my home to help me 3x a week. No rehab, and no shunt. I started to progress, and regained my walking ability on my own by April. In June of 2001, I regressed. I went to see a neurologist. He did a bunch more testing…. he concluded I has CIDP.
I was finally approved in 2002 for physical, speech and occupational therapy for my GBS (How's that for state insurance? It had already been a year and my GBS was now CIDP…MORANS!).
But, because my parents had my children living with them, I lost my medical insurance through the state, so I only went to physical therapy 1 time. And before my ins. stopped, my neurologist put me on Neurontin, which I quickly stopped due to extreme side effects. Life sucked!! I started to self medicate with alcohol and drugs. Of course they numbed my pain, gave me energy, and helped me, but they also started me down a path of self destruction. It took me 2.5 years to figure out that numbing myself was making my CIDP worse.
Now, 11 years later…..although I have amazing medical insurance these days….I refuse to be treated for something that has no cure. Why? Maybe it is a sense of false hope combined with not wanting to put more drugs into my system,
Yes there are things to help ease the process out there, but from my experience, they only work for awhile. I have learned to deal with the pain on my own, and take each day as it comes. I do take Tylenol 3 for extreme pain, that my doc prescribed, but will not take anything stronger. When I have "Lay Low Days" (like I did this weekend, and this morning) I just kick back and enjoy life. Warm showers work, staying covered with socks, sweat pants, hoodies, and sometimes gloves help. I have learned to become resilient to the pain and have concocted my own coping strategies that work for me.
Because of my bad experience with the doctors in San Diego (I moved back up to the Pacific NW in late 2003) I am afraid of being shut down again. I told myself if things become extreme, I would head to the doctor right away. There have been some close calls, but I just wait them out.
On a daily basis since 2000, I do have the vibration sensations, burning feeling, pins and needles thing going on in my right foot, hand, and face. This past weekend it is my both sides of my body, with all of the above, and weakness in my legs and arms, my speech has been off, and I have had the feeling of urgency to use the bathroom, yet nothing happens. Sleeping has been a pain in my butt, because of the pain.
With the pain and symptoms arising again this weekend, I felt the need to reach out and find people like me. That is when I came across this website. After reading about everyone's journey's, their ordeals, successes, or lack thereof with various treatments, it seems as if the medical community has come a bit farther in understanding CIDP since I was first diagnosed in 2001. With that, I have called my doctor, and asked to be seen so I can weigh my options once again. :)
The overwhelmed feeling comes and goes for me. I have learned to not let it take over , like I did in my past. I took up photography to redirect my thoughts. I look at life as a gift, and am very thankful that I am able to be here...right now....sharing my story with you, as well as learn from others about their experience.
Anyway.....If there are typos in this, I am sorry. Please read between the lines. I had to hurry. I have to go to work for a few hours this morning.
Thank you for sharing
I HAVE 2 BOY'S AND THAY HAVE TO HELP ME DO EVERY THING EVEN GET DRESS
I WAS FEELING HOPLESS THEES PAST WEEKS BUT READING ALL YOUR STOYS HELP
I AM NOT ALONE THANHK YOU
MY PRAYERS ARE WITH YOU AND YOUR FAMILY
SUSIE Q
leaking as in leaking spinal fluid. if this is csf, the symptoms will be really bad. I have csf leaks and this would count for a large majority of your symptoms. Have they ruled out arnold chiari malformation of the brain. Where is your cyst
This all started in August of 2011, my right hand and right foot were sore. I am a professional seamtress so i thought arthritis or carpal tunnel in my hand and a stone bruise on my foot. My PCP took xrays and nothing showed up. Meanwhile things are getting worse, the pain, numbness, tingling etc. PCP sent me for a brain MRI. Nothing unusual, so I asked him to refer me to a neurologist. 6 weeks to get into see the neuro and I am almost wheel chair bound by then. Lots of blood tests and 2 markers came back high. One was Rheumatoild Arthritis, but only slightly, neuro said not to worry, but set me up to see a rheumotolgist anyway. The other marker was extremely high for Celiac disease. Sent me to see a gastroentrologist who performed a biopsy on my upper intestine to confirm the celiac. Once this was confirmed my neuro said "well, you don't need me anymore" and promptly resigned to move to Chicago because his wife wanted to go to some culinary school there. Little did I know we really did need him. 3 months later a visit to or gastroentrologist and I am not better, but getting worse. He referred me to another neuro who performed the nerve conductivity test and diagnosed CIDP but wanted a spinal tap to confirm. Yep, you guessed it, another 4 weeks to get this done (why does it take soooooo long to get into doctors or have tests performed?) The protein level was high, but only slightly, neuro wanted a second opinion but I wanted treatment, so another 3 weeks to get scheduled for IVIG. 3 days of treatment and then another 4 weeks to get back into see thed neuro and no improvement. This time he insists I see a "specialist" for a 2nd opinion. Guess what, its been 3 weeks and still no appointment. The neuro's nurse said in could be months to get an appointment. So here I am taking Lyrica, Amitryptalin, Cymbalta and hydrocodone and coping the best I can. Waiting.....
Hi Janac,
You have my sympathy. It seems to be a crazy area as far as the Docs are concerned and we all seem to run around in circles. I think the problem is that they dont know what causes it and have no cure. I am doing IVG because that is what has been recommended but I take Osteo Panadol 3 times a day, try to eat sensibly , lots of water , bland food , exercise , remain active daily and am trying to control my weight and although it is still worsening I am continuing to have a pretty normal life. I expect I am better able to accept it as at 73 I have had a full and happy life but I am sure I would have a different attitude if I were a younger person.
My only general advice is to remain positive , enjoy friends and family and concentrate on things you enjoy and that give you satisfaction rather than entertain dark thoughts.
God Bless , kind regards,best wishes, Ernest Harris.
JanaC said:
This all started in August of 2011, my right hand and right foot were sore. I am a professional seamtress so i thought arthritis or carpal tunnel in my hand and a stone bruise on my foot. My PCP took xrays and nothing showed up. Meanwhile things are getting worse, the pain, numbness, tingling etc. PCP sent me for a brain MRI. Nothing unusual, so I asked him to refer me to a neurologist. 6 weeks to get into see the neuro and I am almost wheel chair bound by then. Lots of blood tests and 2 markers came back high. One was Rheumatoild Arthritis, but only slightly, neuro said not to worry, but set me up to see a rheumotolgist anyway. The other marker was extremely high for Celiac disease. Sent me to see a gastroentrologist who performed a biopsy on my upper intestine to confirm the celiac. Once this was confirmed my neuro said "well, you don't need me anymore" and promptly resigned to move to Chicago because his wife wanted to go to some culinary school there. Little did I know we really did need him. 3 months later a visit to or gastroentrologist and I am not better, but getting worse. He referred me to another neuro who performed the nerve conductivity test and diagnosed CIDP but wanted a spinal tap to confirm. Yep, you guessed it, another 4 weeks to get this done (why does it take soooooo long to get into doctors or have tests performed?) The protein level was high, but only slightly, neuro wanted a second opinion but I wanted treatment, so another 3 weeks to get scheduled for IVIG. 3 days of treatment and then another 4 weeks to get back into see thed neuro and no improvement. This time he insists I see a "specialist" for a 2nd opinion. Guess what, its been 3 weeks and still no appointment. The neuro's nurse said in could be months to get an appointment. So here I am taking Lyrica, Amitryptalin, Cymbalta and hydrocodone and coping the best I can. Waiting.....