I totally understand - I was very lucky that I had a neurologist that knew the right test to (a nerve biopsy) which was done about 2 months after I became ill (just woke up one Saturday morning and could not stand up or walk) was taken to the ER and the ER doctor had the idea that I was their just for pain meds??? The biopsy did confirm the diagnoses of CIDP, it took me almost 9 and 1/2 months to walk again. I have major nerve damage in my feet and legs. The pain is consent and pain meds really do not take it a way.- i am taking gabapentin for the nerve pain, then on a pain patch, plus other pains meds for break through pain. I also have the Ataxia - my legs and feet justt go crazy at times and there is nothing I can do to stop them. I have been doing the IVIG treatments every 8 wks for the last 2 yrs and now my neruo has changed it to every 4 wks. You are correct most doctor's have had or seen a patient with CIDP and they think that if you are on any pain meds it should take care of your pain - as we know this is not the case. CIDP is very rare as we know from what I have researched the the numbers are 1 in 400,000 that are diagnoses with CIDP. - the thing that you really need to do (and it is not easy) is to find a Neruo, GP and pain management doctor that can really help you. I am not sure where you live but the best thing again is to find doctors that are helpful.... also I am not sure what anti-mag is? Can you help me understand this? This is a great website as we know that we are not alone in this fight to get ours lives back something close to normal (if this is at all possible). This website has helped me out a lot. Not sure if any of this help but I hope it does.... Thanks for putting it together
Yoshi
shirl3 said:
Hi Napper4, I was born with it. I have never walked normal (whatever that is) As a toddler when I tried to walk I couldn't. I was told I was 2 and a half or 3 before I finally walked. My parents took me to different Drs but nobody knew what was wrong. I am talking about the late 40s early 50s. At the age of 23 I was seen by the head Nuero at the Alfred Hospital. After numerous tests he told me I have Spino Cellebar degeneration. (sorry about the spelling) He told me I would be in a wheel chair by the age of 30. I am 65 not in one yet but not far off. A professor at the same Hospital told me a few years ago that I now have CIDP. He said after giving me 5 straight days of IntergramP and once a month for 5 months that it didn't work and that I was one of the few that couldn't be helped. More or less "there's the door and close it after you" Since then I have gone down hill in a hurry. My local GP is a joke. I went to him yesterday .I posted on here all about it last night. I have had an hour of sleep all night. It is now 6am and I am that tired but cannot sleep.I took 10 mg of Valium and that was the hour of sleep I got. I don't know how much more I can take. Between these diseases and the quacks that don't even bother to learn about what I have got. I have just about had it.
napper4 said:
Ataxia can be either a symptom or a disease. As a disease it is genetic. Most CIDPers have ataxia as a symptom. Messed up nerves in your feet cause you to walk with an ataxic gait. Unless you have had some sort of genetic testing, you probably have it as a symptom, not the actual disease.
Hi Nancy, I live in Victoria Australia .We need more Drs here. It is so hard to see a another Dr because they are always booked out. They are not taking any new patients on.
Thank you for your support. I went to the hematologist yesterday and she was frustrated and angry that my referring neurologist has not returned her calls. I put in another call to her office this morning and also placed a call to the University of Washington Medical Center. I found they are much more familiar with CIDP (not with anti mag) problem is they are over 70 miles away and I would need to have my husband take time off work to take me there which makes it a financial hardship.
I will try my best to define anti-mag:(myelin associated glycoprotein)The body's immune system produces antibodies that attack specific proteins (mag) located in the myelin sheith. Does that help at all, I have a really hard time understanding it myself.
Bad night for me last night, but that sun is out, it is really cold perfect for the wood stove, autumn leaves everywhere, and two furry friends always making me smile. Peace Nancy
Hi all, Well I had another bad night. I got up to walk about to try and stop my legs from playing up. .I don't know what time it was. Next thing I know I fell over' hitting my head on the set of draws and grazing my leg.(carpet burn).I rang my son who come and settled me down .He gave be 2 sleeping pills and that done the trick. He then stayed until I was asleep. I am so lucky I have him. Stay safe everyone and thank you for putting up with all my moans and groans
don't worry, shirl, we've all been there! Fortunately, I haven't falled but once and that was my arthritic knee locking up! I sure have had black and blue marks though!!! Usually my left side, because that's the direction I usually tip!
Right now I'm waiting for an appt at Mayo. My doctor sent a referral, so hopefully they will give me an appt! Meanwhile I'm not on any treatment, just trying to regulate the pain.
It seems like there's a cycle--pain increasing until I have insomia, then I crash and sleep, but wake up incredibly weak and then the cycle starts again. Anybody else notice this?
I used to suffer from Insomnia and my neurologist suggested I take a tablet called AMIROL a few hours before going to bed
Re aches and pains When I walk for a long time I get these awful strong pain in my right hand side groin I have not been to my neurologist yet as I was on holiday and missed my bi monthly appointment
Does anyone suffer from pain in the groin please ? If so how was it treated
I had pretty bad right sided hip/groin pain. The physical therapist/yoga instructor helped the most with doing gentle stretches and I did need vicodin for the break through pain, but it did go away-good luck, I hope this helps.
Queen Bee said:
don't worry, shirl, we've all been there! Fortunately, I haven't falled but once and that was my arthritic knee locking up! I sure have had black and blue marks though!!! Usually my left side, because that's the direction I usually tip!
Right now I'm waiting for an appt at Mayo. My doctor sent a referral, so hopefully they will give me an appt! Meanwhile I'm not on any treatment, just trying to regulate the pain.
It seems like there's a cycle--pain increasing until I have insomia, then I crash and sleep, but wake up incredibly weak and then the cycle starts again. Anybody else notice this?
I have never heard of nor could I find anything on IntergramP?? Have you tried steroids or IVig for the CIDP? I never heard of untreatable CIDP. You def need new drs
shirl3 said:
Hi all, I went to see my GP today and I am not a happy chappy I told him about sleeping all the time but he didn’t take any notice. I showed him my swollen eyebrow from when I fell over the other week. asked why he didn’t give me a head scan. Told me the injury was on the outside my head and not inside.I am dealing with quacks. I told him I want a different Nuero. He told me they would be the same as the one’s in the Alfred Hospital. But I insisted and I had a win. I asked him about medical marj No go. “It’s like giving me morphine”. He then wrote me out a script for 2 mg Valium. Beam me up scotty .I told him I couldn’t do this anymore and that I was getting very depressed. He then told me it wasn’t depression that I,m feeling .Last night was one of my bad ones.Up and down trying to stop my arm and legs from needing to be stretched.I am aching all over from the effect…To day I found my bra’s in the freezer. I don’t remember doing that. lol. Yesterday I found my pills and a bucket on the coffee table .I am beginning to think I might become a danger to myself. Thanks for listening guys
When I was having severe fatigue and muscle weakness, I would often use lavender scented baby wipes b/c there usually wasn't anyone around to help me. Showering was hard b/c if I closed my eyes, I would fall over and tilting my head back to get my hair wet would cause me to have extreme vertigo complete with vomiting. I was wearing a lot of pony tails in my hair or I kept it pulled up in a clip and used as little hair product in it as possible b/c I didn't have the energy to wash it very often. Wet wipes don't make you feel as clean as if you have showered/bathed, but at least it gets the stink off of you. Hang in there...things will get better!