Hi, I have Ataxia and CIDP. What is wrong with me. All I want to do is sleep. Every part of my body is aching or is painful I am that weak. I am waiting for my son to come back so I can have a shower. If I need to I can yell out and he will help me. Things are getting bad if I have to have my son to assist me. Very embarrassing. My Nuero told me mine is untreatable. Is this a flare up? I have never felt this bad before. I have never had head aches before but since I fell over a couple of weeks ago I seem to have a permanent one. Sorry I must go and get back to bed. Shirl
Hi Shirl sorry to hear things aren`t going so good for you.Taking a shower for me now is putting a chair in their to take a shower.If not I would most likely fall down.I don`t like hearing that your Dr. said your conition is "untreatable"Even if it was true and I hope its not its not right for him opr her to tell you that in my opinion.We all need to have some hope that things will improve.Thats what keeps me going.I will never give up hope I just can`t
You stay strong Shirl and i`ll keep uou in my prays
The mind numbing fatigue is also part of my CIDP. It just washes over me like a wave and I have to go to bed. I had to get a shower chair and hand held shower head. Without them, I could not shower. I live alone, so I have to be careful. Sounds like you should get a second opinion. Or even third. I have just started IVIG treatment. Was diagnosed Aug. 28th. My problems started over a year and a half ago. Saw three neurologists. One even wrote in my medical record that I was faking this and it was all in my head. Another said I had MS without the test results to back it up. All my symptoms are the same as MS. You shouldn't have a headache for that long. See your primary if you can't get into you neuro, but get seen. I have days where I just don't feel right. I know something is wrong. I feel terrible, just can't function. It's my bodies response to this disease. My symptoms will be worse or something new will appear. Good luck.
Thank you John and Jordan .Your words are a gr8 comfort. I am on a pension and don't get much of choice when it comes to doctors. I will go to my GP again and demand an ref to see another Neuro.. Thank you once again. Shirl
Jordan said:
The mind numbing fatigue is also part of my CIDP. It just washes over me like a wave and I have to go to bed. I had to get a shower chair and hand held shower head. Without them, I could not shower. I live alone, so I have to be careful. Sounds like you should get a second opinion. Or even third. I have just started IVIG treatment. Was diagnosed Aug. 28th. My problems started over a year and a half ago. Saw three neurologists. One even wrote in my medical record that I was faking this and it was all in my head. Another said I had MS without the test results to back it up. All my symptoms are the same as MS. You shouldn't have a headache for that long. See your primary if you can't get into you neuro, but get seen. I have days where I just don't feel right. I know something is wrong. I feel terrible, just can't function. It's my bodies response to this disease. My symptoms will be worse or something new will appear. Good luck.
hi Shirl,
I wish I could offer you a big fat joint of good indica as it sounds like it might help.
akamalaccas said:
hi Shirl,
I wish I could offer you a big fat joint of good indica as it sounds like it might help.
This will be short. I understand you and your issues. Takes me 45 min. to me to shower. Just finished a loading trial of IVIG. My neuro won't order any more until he sees me for f/u appt. HE has not seen me since 6-2013. My hands no longer work, cannot drive...and I think I have an infection from the IV site. So, I do have a few times during the day when I have no pain. Early morning...body has been quiet all night...feels as if I'm whole again. Few min. later all goes away...and the day starts again. Cherish each moment you have without pain because it creates a path to the pain free moments. Well, this was not "short" but I wanted to take the time to key this message. Stay as well.
Appreciated.Id ask for medical help with the infection.
bales said:
This will be short. I understand you and your issues. Takes me 45 min. to me to shower. Just finished a loading trial of IVIG. My neuro won't order any more until he sees me for f/u appt. HE has not seen me since 6-2013. My hands no longer work, cannot drive...and I think I have an infection from the IV site. So, I do have a few times during the day when I have no pain. Early morning...body has been quiet all night...feels as if I'm whole again. Few min. later all goes away...and the day starts again. Cherish each moment you have without pain because it creates a path to the pain free moments. Well, this was not "short" but I wanted to take the time to key this message. Stay as well.
akamalaccas said:
hi Shirl,
I wish I could offer you a big fat joint of good indica as it sounds like it might help.
Oh yeah. It really does help because of its anti-inflammatory characteristics. The only thing I hate is smoking it (which has the fastest effect) so I opted using a vaporizer , much safer, and easy on the throat. beats imuran and other pain relievers.
Even with 5 days of IVIG every three months I still get overwhelming fatigue interspersed with mind numbing insomnia sometimes together (had to stop putting my wallet in my trouser pockets because 3am tv infomercials and a handy credit card are just too dangerous in a sleep deprived state and im petitioning ebay to shut down after 10pm)
EDIT: anyone want a 25ft self expanding water hose, I live on the first floor and have no garden........see what I mean!!!
Hi, Now that sounds like a good idea. My son just read this and he roared with laughter.. LOL. Thank you for cheering me up. Shirl
akamalaccas said:
hi Shirl,
I wish I could offer you a big fat joint of good indica as it sounds like it might help.
Hi, I know that feeling. I'll sign your petition but only if you include Paypal as well. LOL I have just woken up again and you and Akamalaccas have really made my day. Thank you.
bill2503 said:
Even with 5 days of IVIG every three months I still get overwhelming fatigue interspersed with mind numbing insomnia sometimes together (had to stop putting my wallet in my trouser pockets because 3am tv infomercials and a handy credit card are just too dangerous in a sleep deprived state and im petitioning ebay to shut down after 10pm)
HI Shirl
Tell now i have never heard of Ataxia, It sounds like many CIDPer's have this condition and don't know it, Shirl are you on a exercise program?
Hi, was this your first IVIG? My Nuero told me after I had my first and only IVIG that I was one of the few that couldn't be treated. Then more or less "there's the door and close it behind you" That was 3 or 4 yrs ago. Since then I have had to rely on my GP. If I didn't tell him what meds I need I would have nothing .After having pneumonia and ending up in hospital twice and stopping it twice before it got worse with antibotics. he has put me on low dose steroids.I have minor heart failyer (sorry cant seem to spell properly today)so this helps to strengthen the lungs. One of the good things on this site nobody corrects our spelling. It looks like we all have the same problem. .I understand you about your hands. I have pickup sticks all over the place. I have one in the shower because I drop the soap at least 5 or 6 times.I get so sick of dropping things. I must go now . Shirl
bales said:
This will be short. I understand you and your issues. Takes me 45 min. to me to shower. Just finished a loading trial of IVIG. My neuro won't order any more until he sees me for f/u appt. HE has not seen me since 6-2013. My hands no longer work, cannot drive...and I think I have an infection from the IV site. So, I do have a few times during the day when I have no pain. Early morning...body has been quiet all night...feels as if I'm whole again. Few min. later all goes away...and the day starts again. Cherish each moment you have without pain because it creates a path to the pain free moments. Well, this was not "short" but I wanted to take the time to key this message. Stay as well.
Hi, is this the same as dope? If not how do I go about getting it? I do not smoke so that's not an option Shirl
ultimax said:
akamalaccas said:hi Shirl,
I wish I could offer you a big fat joint of good indica as it sounds like it might help.
Oh yeah. It really does help because of its anti-inflammatory characteristics. The only thing I hate is smoking it (which has the fastest effect) so I opted using a vaporizer , much safer, and easy on the throat. beats imuran and other pain relievers.
HI' look on the top right hand of this page and it will tell you about Ataxia. It simular to CIDP. A couple of weeks ago I ended in hospital because of my restless legs.( I took too many pills to try and stop the pain, I didn't mean too) Anyway a physio called in to see me. I said to her I needed to save what mussle's I had left.. The other day she rang me and I booked an app .I find it hard to exercise because of my balance. I walk like a drunk. I don't even drink. LOL I read some where that Ataxians walk a bit better after a Cpl of drinks. Makes them forget about their balance or something to that effect .take care. Shirl
jerrycam said:
HI Shirl
Tell now i have never heard of Ataxia, It sounds like many CIDPer's have this condition and don't know it, Shirl are you on a exercise program?
jerrycam said:
HI Shirl
Shirl if you are not seeing a Neuro now please see one soon
If you have legalized medical marijuana in your state, there are a number of non-smoking options, including "edibles" which could be caramels, cookies etc. I prefer to smoke myself, but I'm switching to a vaporizer. It's been very helpful to me for pain relief, or maybe it's that I don't care about the pain when I take it. :-)
ultimax said:
akamalaccas said:hi Shirl,
I wish I could offer you a big fat joint of good indica as it sounds like it might help.
Oh yeah. It really does help because of its anti-inflammatory characteristics. The only thing I hate is smoking it (which has the fastest effect) so I opted using a vaporizer , much safer, and easy on the throat. beats imuran and other pain relievers.
Hi, I just googled indica and what a eye opener. I know about weed but had never heard of indica. I will see if Australia has this in medicine form. Shirl
ultimax said:
akamalaccas said:hi Shirl,
I wish I could offer you a big fat joint of good indica as it sounds like it might help.
Oh yeah. It really does help because of its anti-inflammatory characteristics. The only thing I hate is smoking it (which has the fastest effect) so I opted using a vaporizer , much safer, and easy on the throat. beats imuran and other pain relievers.
Shiri
I understand your issues there are nights that my legs move so much I don't sleep. I was diagnosed just over 2 yrs ago just woke up one morning and cold not walk and good thing for me my Neuro believed me and never told me it was in my head. Showers can take me 30 to 40 minutes and I live alone - I need to make sure that I always bring a phone with me. I have been on IVIG treatments every 8 weeks since early 2012 (this was after 3 mons in a SNF and 3 weeks in a rehab hosp). The IVIG does help and so does the medication for restless leg. As far as the pain there is not a second out of the the day that I do not have pain but I do see a pain specialist. So one thing I can say if you have to go for the second opinion or third if need be.Its important to find a doctor that can help you that you trust- just keep pushing I know it gets hard. But there are always friends out there....