Hi all am a newbie to this group and must say I am pleased to have found it this thing isn’t very common making it hard to share what is happening with anyone. I have not long passed the one year mark but during this time I have only been taking medication to relieve my symptoms (mind you have had to increase this 6 times). About mid way through this 12 months my neurologist did another nerve test which showed some improvement and said I would get better but that it might take a year or two and proceeded to write me off his books. Unfortunately he was wrong and this thing has now spread from my legs to my feet torso, back, neck and face including my tongue. I had quite bad pins and needles, burning sensations cramps and pain. My ability to move however has not deteriorated significantly with the exception of stairs and hills. My neurologist originally said he would not consider Ivig because it is so expensive and I could still walk. My question is has anyone also had a slow progression and did they improve to the point of recovery. I am back to see my neurologist late next month and would just like some reassurance that leaving his office without some form of treatment really wouldn’t be a smart move.
I must admit I WAS one of those people who thought that what a doctor said was gospel but this belief rapidly disappeared after having two doctors tell me it was all in my head.
Thanks for that I must admit I feel like a bit of a sook when I see how severely other people like yourself are and have been affected. But as I said this thing is kicking along. Will have a look at the links you sent, I hadn’t done so because I am not on IVIG.
Followed the links you have sent. I had been to the international cidp/gobs site before but didn’t find these booklets. They were extremely helpful am going to print the cidp one and take it to the neurologist. Not receiving any treatment is silly better to nip this thing in the bud. I feel much better educated and am going to stand on my digs next month. I think doctors incorrectly assume that because something is rare means no one they treat will have it. The first neurologist I saw who eventually begrudgingly gave me a nerve test after twice telling me it was all in my head was most surprised when it was found I had no “f” waves. I will never forget her response she said It would get better or worse and sent me on my way.
A big thank you from me to you.
mdolich said:
Don’t wait till it’s to late! Learn all about it now so you can understand and be able to converse better with your doctor. It’s better to be well informed then not too. My doctor knows that I read all I can and get all the info I can find on GBS/CIDP, so he knows he can’t pull the wool over my eyes. A lot of doctors will try to if they think you don’t know anything about the disease. That’s why I give all the new members these links, so they can learn about CIDP and other neurological disorders and treatments.
Good Luck,
Bean said:
Thanks for that I must admit I feel like a bit of a sook when I see how severely other people like yourself are and have been affected. But as I said this thing is kicking along. Will have a look at the links you sent, I hadn’t done so because I am not on IVIG.
Hi all, my neuro said that because the IVIG didn't work, ( Mind you that was only 5 straight days and then once a month for 5 months ) I was one of the few that couldn't be helped. He more or less said "there's the door and close it on your way out". Now they tell me I have to wait 12 months for an appointment. I don't think I'll go back. The only treatment I am on is Oxycotin and a low dose Predsolone which my local Dr put me on. He put me on the Predsolone to strengthen my lungs because I had Pneumonia twice and nipped in the bud twice more. If my neuro wont help me then I give up. I now have shaking hands and when I put my hand out my fingers jerk and move on their own. I also have Ataxia which is a pain in it self. I give up. Thank the Lord I have a very supportive son. Thank you for listening to my self pity groan.
Hi all, my neuro said that because the IVIG didn't work, ( Mind you that was only 5 straight days and then once a month for 5 months ) I was one of the few that couldn't be helped. He more or less said "there's the door and close it on your way out". Now they tell me I have to wait 12 months for an appointment. I don't think I'll go back. The only treatment I am on is Oxycotin and a low dose Predsolone which my local Dr put me on. He put me on the Predsolone to strengthen my lungs because I had Pneumonia twice and nipped in the bud twice more. If my neuro wont help me then I give up. I now have shaking hands and when I put my hand out my fingers jerk and move on their own. I also have Ataxia which is a pain in it self. I give up. Thank the Lord I have a very supportive son. Thank you for listening to my self pity groan.
Hi Shirl if this reply ends up appearing twice I apologise still getting used to learning how to drive this thing. Are you able to get a referral to a new neurologist. It is very hard when these specialists are as scarce as hens teeth. Or perhaps you could go to the outpatient of a major hospital. What about taking your son with you - strength in numbers. It is very hard when you visit a doctor expecting/hoping for solutions but instead get a brush off and are expected toady for this lack of service.
Bean said:
shirl3 said:
Hi all, my neuro said that because the IVIG didn’t work, ( Mind you that was only 5 straight days and then once a month for 5 months ) I was one of the few that couldn’t be helped. He more or less said “there’s the door and close it on your way out”. Now they tell me I have to wait 12 months for an appointment. I don’t think I’ll go back. The only treatment I am on is Oxycotin and a low dose Predsolone which my local Dr put me on. He put me on the Predsolone to strengthen my lungs because I had Pneumonia twice and nipped in the bud twice more. If my neuro wont help me then I give up. I now have shaking hands and when I put my hand out my fingers jerk and move on their own. I also have Ataxia which is a pain in it self. I give up. Thank the Lord I have a very supportive son. Thank you for listening to my self pity groan.
Hi Bean, My Neuro is a professor at a big city hospital. My local Dr says that if I find another neuro he will refer me but he doesn't think it would be any help I am surrounded my negative Doctors. My son who is 43 is starting to get symptoms and he has no faith in any of them. Sorry for groaning so much, it 's not one of my better days. Tomorrow,hopefully' will be better.Thanks again for listening to me. shirl
My pleasure Shirl I sincerely hope things pick up for you soon. It is bad enough being unwell without having to see negative doctors. Be kind to yourself.
shirl3 said:
Hi Bean, My Neuro is a professor at a big city hospital. My local Dr says that if I find another neuro he will refer me but he doesn’t think it would be any help I am surrounded my negative Doctors. My son who is 43 is starting to get symptoms and he has no faith in any of them. Sorry for groaning so much, it ‘s not one of my better days. Tomorrow,hopefully’ will be better.Thanks again for listening to me. shirl
Bean - My symptoms started in 2011 and slowly progressed until January 2012 when they became markedly worse. Tingling, zinging nerves, watching muscles twitching constantly in my legs (poor muscles - wouldn't you think they have every right to be tired!), weakness, unbelievable fatigue, nausea, headaches, poor sleep. Yeah, my primary care dr told me just a few months ago that "once my depression was better my symptoms would improve"...not so much! Was finally diagnosed through a muscle/nerve biopsy which showed 50-60% of the myelin sheath gone. My dr started with Solumedrol, which didn't help me, then on to IVIG. Yes, it's expensive, but this is our life!! My slow progression is still slowly progressing and I, too, want to know it there's any hope to get better. I actually had a couple of days 2 weeks ago that I felt a little better - what a blessing those days were!! I have IVIG again this week.
Many thanks for the response Cheryl, that really does help. The last time I saw my gp she told me it was nothing more than a pinched nerve from running and that I was basically a screw lose because my cidp causes a vibration in my head which my endep helps. Her point being that endep is for people who suffer a mental illness. All of this despite the neurologists report. Fortunately she was a registrar and has moved on.
Cheryl Anna said:
Bean - My symptoms started in 2011 and slowly progressed until January 2012 when they became markedly worse. Tingling, zinging nerves, watching muscles twitching constantly in my legs (poor muscles - wouldn’t you think they have every right to be tired!), weakness, unbelievable fatigue, nausea, headaches, poor sleep. Yeah, my primary care dr told me just a few months ago that “once my depression was better my symptoms would improve”…not so much! Was finally diagnosed through a muscle/nerve biopsy which showed 50-60% of the myelin sheath gone. My dr started with Solumedrol, which didn’t help me, then on to IVIG. Yes, it’s expensive, but this is our life!! My slow progression is still slowly progressing and I, too, want to know it there’s any hope to get better. I actually had a couple of days 2 weeks ago that I felt a little better - what a blessing those days were!! I have IVIG again this week.
Mdolich - Thank you for the response. No one ever said "IVIG will help slow the progression" to me and it makes so much sense. All my brain could focus on was the "no cure" part....so then what happens? Slowing progression of a disease is a good thing! I have IVIG every 4 weeks; tomorrow is my first day for this treatment, too. Thanks!!!
Hi Bean (and all), I am feeling better than I was yesterday, (Thank you Bean.) On the subject of Endep I have been on that for years. My Dr put me on them to strengthen my weak bladder. These vibrations you get, is it like a loud humming that gets louder and louder until you feel like your head is going to explode?
Good luck with your first treatment hope all goes well.
Cheryl Anna said:
Mdolich - Thank you for the response. No one ever said “IVIG will help slow the progression” to me and it makes so much sense. All my brain could focus on was the “no cure” part…so then what happens? Slowing progression of a disease is a good thing! I have IVIG every 4 weeks; tomorrow is my first day for this treatment, too. Thanks!!!
No not really a humming and vibration isn’t really the right word either but it is kinda close, the intensity doesn’t increase when it happens it is just constant it is very annoying.
shirl3 said:
Hi Bean (and all), I am feeling better than I was yesterday, (Thank you Bean.) On the subject of Endep I have been on that for years. My Dr put me on them to strengthen my weak bladder. These vibrations you get, is it like a loud humming that gets louder and louder until you feel like your head is going to explode?
It sounds like you have Tinnitus. And that is very annoying. When it stops the silence is beautiful. Mine sounds like there is a gale force wind outside. So between the tinnitus and that awful humming it is no wonder the TV is on full volume.lol
Just caught up with this discussion. Had my 6 month review with my neuro today and asked about IVIg v other treatments (having been recently aware of British research and prednisone). I am on 4 week IVIg.
His "take" on prednisone is that it will give you a temporary "cure" but at quite a risk as the stuff has a number of possibly nasty side effects at the rates required for the "cure". The "cure" is however usually (apparently) only temporary because it does not fix the underlying problem. Stop the prednisone and back on the slide.
IVIg will, for many people, give some repair and then hold. The half life of the product I use in 22 days so at 28 days I am "getting the itch". When I have gone to 35 days then I really look forward to it even though I HATE needles!
Unfortunately not everyone responds to IVIg so that is where prednisone and the other less common products are used - not as safe but if they do the job you can't complain too much.
Progression in peripheral neuropathy varies greatly from acute (rapid onset types like GBS or AIDP) to really mild and/or slow like the various types of CIDP. The problem is that there are lots of variants including some that regularly stop and restart and some so mild that no treatment is required and some that get really serious. You will see the statement "everyone is different" here often and that is really true.
Final clue for today - If you want to research your condition you should (generally) ignore Google Search other than for general stuff. Get into Google Scholar but remember you may not have access to that reference you really want unless you pay or get it through a library.
Many thanks for that information Michael. i have learnt more from this group then I have in the last 12 months. I will be very careful in the research material I rely on but I am definitely taking the international cidp/gobs brochure with me to my next appointment.
Michael C Stark said:
Just caught up with this discussion. Had my 6 month review with my neuro today and asked about IVIg v other treatments (having been recently aware of British research and prednisone). I am on 4 week IVIg.
His “take” on prednisone is that it will give you a temporary “cure” but at quite a risk as the stuff has a number of possibly nasty side effects at the rates required for the “cure”. The “cure” is however usually (apparently) only temporary because it does not fix the underlying problem. Stop the prednisone and back on the slide.
IVIg will, for many people, give some repair and then hold. The half life of the product I use in 22 days so at 28 days I am “getting the itch”. When I have gone to 35 days then I really look forward to it even though I HATE needles!
Unfortunately not everyone responds to IVIg so that is where prednisone and the other less common products are used - not as safe but if they do the job you can’t complain too much.
Progression in peripheral neuropathy varies greatly from acute (rapid onset types like GBS or AIDP) to really mild and/or slow like the various types of CIDP. The problem is that there are lots of variants including some that regularly stop and restart and some so mild that no treatment is required and some that get really serious. You will see the statement “everyone is different” here often and that is really true.
Final clue for today - If you want to research your condition you should (generally) ignore Google Search other than for general stuff. Get into Google Scholar but remember you may not have access to that reference you really want unless you pay or get it through a library.