Does CIDP also affect the upper legs.

Eric, yes, it started in the lower legs for me but eventually progressed to upper legs, lower arms, then upper arms, then face and trunk. Now that the acute phase is over the relapses tend to target the muscles I use more often, like my quadriceps, biceps and triceps… or maybe I only notice it there more because there is more damage in the other areas. At any rate, yes, my upper thighs are also involved. Sorry to hear you’re getting new symptoms at this late of a date… maybe you should give your doctor a call and make sure you’re not relapsing or having a fresh attack?

Julie

Eric,
I have CIDP but not really a typical case according to my neuro as most people with CIDP don’t have facial or autonomic involvement, that more typically goes with GBS and it’s variants, but the timeline and remainder of my symptoms are more like typical CIDP. But if there is one thing I’ve learned about this family of diseases is that they have NOT spent enough money or time in research on the different variations of CIDP. My CIDP is relapsing/remitting progressive… meaning I’ll get worse then better but overall without treatment I go downhill. The IVIg seems to be putting a hold on the progress right now so we’ll just keep on keeping our fingers crossed. By peripheral nervous system disease they only mean that it typically attacks the nerves outside the brain and spinal cord but it can attack any part of your limbs and trunk and still be called a peripheral nervous system disease. When you start getting problems with your internal organs, your eyes and face then they like to throw different variations at you but CIDP is basically a peripheral disease vs. MS which is a CNS disease. There is no part of my body that has been left untouched so far, except my brain and spinal cord – small favors huh? HA HA HA!

Take care Eric and feel free to send me a Private Message if you have questions you don’t want to ask in public.

Julie

Hi Ericc,
Do you currently receive ivig for your cidp? If so, perhaps there is a new flare up (demylienation) occurring and a loading dose of ivig followed by closer interval maint. doses might be warranted.
Good luck,
Dawn Kevies mom

Yet another thought, I remember reading on this sight that others with the progressive variant do not always recognize events on a daily or even monthly time line, but more like, ” wow, I used to be able to do that last year ” kind of thing. So perhaps your observation just reached that ah ha moment. I would definateley ask the doc for additional ivig. Also, I do not know how old you are or how long you have been on ivig, or what your thoughts on other drugs are, but maybe a combination of treatments could be heklpful inhalting the progression. Some on this site have gone into remission so to speak with certain drugs.
Dawn

ERICC!!!!
So NOT true! The doc is WRONG!!!!! IVIG CAN STILL help cidp, it is as you said PROGRESSIVE, ACTIVE, A CONTINUAL demylienation. SIGN UP AT THE VA!!!!!!!!! Youe deserve it, we owe you! Ask a congressman to help you get to the front, I bet you would not have to wait due to the nature of the illness and the noticed progression, as your recent ncv indicated. There is another person on the site, a friend of mine, Lameka, a very nice lady. She too was in the Navy SOME TIME AGO, and she was offered ivig. PM her, I know she will help. I will call her tonight to leave you a private message.

You must have a mild case, as the progression seems slow, to have gone all of those years w/out treatment. Perhaps the sooner you can get ivig, you will see a marked improvemnt. Thanks for serving and take advantage of what you have coming!! Remember, this is an election year, see if any candidates are going to be in your town, slip them a note, shake their hand and ask, beg, whatever. I bet it would be great P.R., (vet helps vet get care Mccain) Hilary helps vet get care, Obama changes the way vets get care. Who cares who helps you, try them all!! In the end if you could get what you need, that is all that matters!
Dawn Kevies mom

ERICC!!!!
So NOT true! The doc is WRONG!!!!! IVIG CAN STILL help cidp, it is as you said PROGRESSIVE, ACTIVE, A CONTINUAL demylienation. SIGN UP AT THE VA!!!!!!!!! Youe deserve it, we owe you! Ask a congressman to help you get to the front, I bet you would not have to wait due to the nature of the illness and the noticed progression, as your recent ncv indicated. There is another person on the site, a friend of mine, Lameka, a very nice lady. She too was in the Navy SOME TIME AGO, and she was offered ivig. PM her, I know she will help. I will call her tonight to leave you a private message.

You must have a mild case, as the progression seems slow, to have gone all of those years w/out treatment. Perhaps the sooner you can get ivig, you will see a marked improvemnt. Thanks for serving and take advantage of what you have coming!! Remember, this is an election year, see if any candidates are going to be in your town, slip them a note, shake their hand and ask, beg, whatever. I bet it would be great P.R., (vet helps vet get care Mccain) Hilary helps vet get care, Obama changes the way vets get care. Who cares who helps you, try them all!! In the end if you could get what you need, that is all that matters!
Dawn Kevies mom

Ericc,

It really doesnt sound as if your neuro knows much about CIDP, is there a possibility you could find someone else? There is so much that can be done for you. Dawn is right, if you are able to sign up for the VA, do that and get the care you need.

[QUOTE=ERICC]Thanks again Julie…..o.k. i see what your saying by peripheral vs CNS. By autonomic do you mean Urine or Bowel functions with CIDP. Although super slow compared to ALS i’m starting to wonder since mine has been 95% motor to 5% sensory if our disease is simular to it.

Ericc…..[/QUOTE]

Hi Eric,
Yes, by autonomic I mean urine, bowels, blood pressure – and interestingly the production of tears, all that stuff we take for granted because we don’t have to think about it, though not our heart rate fortunately – that has it’s own control system. One easy way to tell if your autonomic system has been affected is by measuring the change in your blood pressure when you are sitting, then after you stand up. If your blood pressure drops more than a couple of points then you have something called orthostatic hypotension, a hallmark of autonomic involvement and that means you have to be careful when you get out of bed, or stand after sitting for awhile so you don’t pass out as all your blood rushes to your feet. It hasn’t been that big of a deal for me because I’ve always had low blood pressure so it’s no change to get up slowly etc. The lack of production of tears is also no big deal, I’ve got this gooey gel I put in my eyes and that keeps the tear ducts from clogging up and giving me styes. My bowels and bladder continue to have difficulties functioning normally but it’s not like I need Depends or am too embarrased to go out in public.

For the most part my CIDP was slow growing – it took about 18 months to go from feeling a little numbness in my foot to feeling a lot of numbness over 90% of my body but it had a cascade effect – the worse I got the faster I got worse, if that makes any sense. That last week before the ICU I went from just my arms and legs being weak and numb to being paralyzed and unable to breathe, it was so fast one day I could trace the progression from one side of my face to another in about 3 hours.

I think the motor vs. sensory is probably an individual thing for CIDP patients, some folks have no sensory involvement, others have primarily sensory and not motor, some are mixed. They are both bad, neither is preferable.

I agree that you need treatment, if your symptoms are getting worse, no matter how slowly, then you need treatment to keep from getting permanent damage. Others have given you great ideas on nabbing politicians etc. for help with the VA, the only thing I would add is to put together a “press package” for yourself with a brief history of your illness, a textbook definition of CIDP and what you need in terms of support from them. It wouldn’t hurt to emphasize what you have done for your country, we owe you this treatment and you deserve it.

Take care and HAPPY FRIDAY EVERYONE!

Julie

Ericc

It sounds like your CIDP acts like mine. It has been a slow constant progression. I have not had a “relapse” in the sense that I have had an acute phase, it has always been slow and progressive.

I first had numb toes in 1989. I was 31, born in ’58. The neuro at the time had no other diagnosis than peripheral neuropathy, and no treatment other than reduce stress. In 1993 I went back for further studies. Another EMG and they said it had gotten a bit worse, but not much. Things progressed bit by bit, and in 1999 I decided to get a diagnosis. It had gotten worse.

I was finally diagnosed in late ’99. I started prednisone, imuran, etc. Neither one gave me back what I had lost. In 2001 I changed jobs and got into a bad situation. In 2003 I started a business, and in 2004 I was on SS disability.

As far as the neuropathy goes, yes it started in the feet, and the overwhelming problem was sensory. My feet got pretty numb, and then they got weaker. It took a while for the CIDP to progress up past my knees, but it has now. My feet are more completely numb, and my thighs are involved peripherally. Which means you can pull hair out, but if you hit me I will feel the impact and the pressure. I won’t feel what hit me, just that something did.

I do have hand involvement, increasing more and more over the years. Like I said, it started out sensory, and has progressed to the point where muscular involvement is added. I was a big strong guy, so I still have strength, but I am down 50% of what I had.

Like I say, it sounds like yours and mine are following a similar path, being slowly progressive.

I have been off the forum for a little while, but I will start checking back for you if I can help at all. Let me know

Dick Schonewolf

my journey with cidp seems very similar to yours. I started experiencing numbness in my feet in 2000, after a viral infection in 1999. I was dx with a mild case of cidp in 2003. Not much changed over the last 5 years. I have not been on any meds.
Last summer I started noticing a change in my legs. The numbness had moved up from my feet and calves, and was now in my thighs. It really became pronounced by December. My legs now feel very fatigued all of the time. I also have noticed that I am feeling the same fatigue in my arms. No numbness or tingling, just a tightness and fatigue.
I had an EMG this week and the Neuro said I had some atrophy in my feet. Its scary because it all happened so slowly, that I can’t really tell when it started getting worse. I havent experienced a lot of pain, just the fatigue. I have a LP scheduled later this month, then hopefully I can get started on IVIG.
Grace to all,
Charles

ERICC — I’m not sure where you are located, but my former neurologist is now with a VA hospital and I would HIGHLY reccommend him. He diagnosed by CIDP, is a fantastic doctor who is creative and willing to listen. He left private practice for the VA a couple of years ago. If you want his info, PM me — good luck!

I”ll jump in here too with Eric, Charles and Dick. I too have had a slowly progressing numbness which started in about August 2006 with a feeling like there was a pad or wooden block under the balls of my feet when I was running. By the end of ’06 I had numbness in my toes and then about 9 months of tests to finally conclude that I have IgM MGUS which is a variant of CIDP.
I read the forum often and cannot get over the pain and difficulty of others. Like Julie who I highly admire for braving the pain and misery of CIDP while reaching out to help others!
With my form of CIDP, there is no pain. Just a slow steady increase in numbness and weakness. My fingers now are numb and it comes up my legs to the knees. I can’t run anymore and small things which require the sensory nerves seem to reveal themselves…like trying to stand in the shower with my eyes closed, or trying to feel the rough spots when sanding wood, etc etc. My family would shoot me for saying this but even picking my nose isn’t what it used to be.
The treatment I am receiving is Rituxan which is apparently less expensive than IVIG. But it depends on what your doctors come up with in their final diagnosis whether they prescribe Rituxan or not.
I just thought I would mention this variant in case that is what you have. There are a couple others here on the forum with the same thing (see the thread CIDP – Rituxan Treatment? at [url]http://www.gbs-cidp.org/forums/showthread.php?t=204[/url]
Andrew

Hi Eric,
Yes, I am now experiencing the alterated sensation (numbness, etc) above my knees (it stopped just below the knees for years).
I started with numbs toes about 8 years ago. My face is also affected and burns & aches (trigeminal nerve) and I have a really annoying tremor in my jaw! I also have autonomic involvement.
I can’t get up if I am sitting on the floor – I have to grab on to something (chair, human etc) and pull myself up.
Also, from the waist down – I feel as if I weigh a ton! Totally out of context of my actual weight which is 53 kgs.
At least you know you are not alone – If that is any comfort!
Best wishes,
Kazza