Does anyone know how to find help? I was diagnosed with CIDP since 1998. Chronic Progressive and seemingly Relapsing. After a car accident four years ago, it seems to be worse. May I ask if anyone has ever experienced an atrophy in their legs with weakness and instability? Have others experienced their “gait” being off? Please advise. Thank you.
Lori,
I don’t don’t if this will help you but I was diagnosed with CIDP in 2012. After taking the IVIG treatments and not getting better I ended up at the Mayo Clinic where I was diagnosed with POEMS Syndrome. In the case of POEMS 70% of the time it is initially misdiagnosed at CIDP.
Ed Gallegos
Territory Resources LLC
personal information removed for posters protection, Tj Mod support
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Lori you need to see a Nuerologist to see if you can get on a regimine of IVIG or SCIG. Cortisteroids and plaspherisis are also options. I have had weakness in my arms and legs to the point of not being able to get out of bed. That’s been about 10 percent of the time. Most of the time I fluctuate between functioning at 50-90 percent of normal. It’s different daily.
Hi Lori,
I would strongly suggest finding a qualified Neuro or Neurovascular specialist at a Tertiary center with ties to a known University that is participating in ongoing medical research or has a med school link.
I say this because it is at these levels where the ongoing research is being done. Not in individual MD specialist offices per se in itself.
Finding a truly qualified Physician specialist for this condition is challenging as Neuro’s as a whole all have their own preferences and sub specialty focus- it can be tricky and very time consuming to find one that knows what is happening in the field currently who has ties/interests in what is happening from a research perspective in particular.
I tried but was unsuccessful at a time when I really needed that level of expertise. I live in southern California where there are well known facilities and schools but even at that , back in the day, the choice was extremely limited. Despite living in a State with a very large population I wasn’t successful in finding any Neuro qualified to offer me actual help and guidance until it was waaaay too late.
7 yrs ago when my world physically fell apart I went to my Internist who directed me to a Neuro who had no clue . Instead of being honest and redirecting me he told me I had “Fibromyalgia” and to go find a Rheumatologist which would likely take me many many months to find as there aren’t enough Rheum MDs and the ones there are have very stable patient populations because of the scarcity of that specialty being available. The Fibro diagnosis in particular closed a lot of doors for me back then even though that is Not what I ended up being correctly diagnosed with.
I finally found a great Neuro at a Tertiary center in downtown LA, no where near where I live, who said it was too late4o be tried on IVIG or Plasmaphoresis. I was left with permanent nerve damage involving my spine with flare ups out of the blue at times resulting in an increased problem with balance, grip strength and muscle weakness.
I wish someone had told me what I am suggesting to you now when this matter initially “hit” me like a runaway train when there may have been options available to try in a timely enough matter to possibly have made a difference.
For me, I ended up having to drop out of the work force many years before I had ever thought I would, qualifying for permanent Disability via Social Security and all that entails.
Sadly, there is still no ‘magic bullet” for those of us afflicted with this unusual condition that typically does tend to be readily misdiagnosed initially outta the gate.
Best wishes and Keep Trying!!
Lee
Lori,
Prior to my battle with GBS in 2005-2006, I was a musician. Musical Theatre, conducting, composition. Clearly I can’t do this anymore. But subsequently I’ve worked as a literary critic for several publishing houses un which they send me galleys not of my choosing and I must write a critical essay or what the public calls a “review.”
One of the books I reviewed may be of interest. Joseph Hickman, “The Burn Pits” look it up on Amazon.
Dave
Hi @Lori Lori,
I found my Email name along with several other people’s Email names that I received yesterday (but read today).
I haven’t gone on the Polyneuropathy site in a long time so was very surprised to be included in what was sent out.
I was retrospectively finally correctly diagnosed with AIDP (as opposed to “Fibromyalgia” I was originally told I had by the 1st idiot Neuro I saw) in 2009.
No, I don’t have leg or muscle atrophy per se.
Atrophy is a permanent state. Which is Not what I have.
What I do have periodically is sudden unanticipated episodes of having my balance go “off”, feeling a measure of leg weakness and occasionally a decrease in some of my hand grip strength.
Sometimes I have 2 out of the 3, other times I only notice maybe 1 out of the 3.
All recover over esp if I sit down as soon as I can when I notice it happening.
It doesn’t last long but does take a wee bit of time to get back to what I consider to be my normal baseline.
I have learned from experience that when I notice I am tripping (literally) it usually always involves my right foot (I am right hand dominant).
I correlate this to be my warning sign that I have be take much greater care than usual when walking or carrying/holding things right then.
I have found I can’t walk in a straight line on any Uneven surfaces any more because trying to do so automatically throws off my balance which increases my risk of falling.
And yes, I have fallen.
Ever notice tree trunks that have caused a sidewalk or paved surface to heave up unevenly? Walking on an uneven non paved path/road or a path with a sudden higher or lower elevation? That is what I mean by uneven surface.
Over time, I have come to equate the above, for me, with the Nerve Damage caused by the Guillain Barre Syndrome (GBS) I had in 2009.
I believe AIDP and perhaps CIDP are both offshoots of GBS.
I also believe GBS can Damage nerve pathways that in turn can cause weird momentary things like I what I have tried to describe above.
I’ve no idea if what I have identified above relates to you or not.
Perhaps your car accident created a slightly added insult from a nerve damage perspective to a previously negatively impacted area involving your legs??
Does your balance go “off” a lot ? Under what circumstances (what were you doing the last time it happened) ?
I am no medical expert but thought I would share my perspective with you and invite you to really think if the same, to any degree, might also apply in your situation.
Pay particular attention as soon as you seem to be or feel “off” the next time.
Perhaps you too might be noticing what I think is happening to me because of the damage you sustained?
Or, If you have this sense of being/feeling “off” all of the time I encourage you to see your Neurologist to see if he/she thinks your Fall may have caused some sort of added damage or even impingement in some way that is creating the problem.
Weighing in with my 2 cents,
Lee
@Lori,
I’m 71 (72 on January 4).
I wear a leg brace on my left foot to “cure” the drop foot. It works quite well. My Medicare insurance covered it.
I have a CMT. I was diagnosed less than a year ago.
Ray in New Orleans
Thanks, Ray! That’s a great idea, so one can miss falling on their face when their leg doesn’t go up on the curb!
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I too have experienced such problems with legs and associated gait.
Yes my hair off. The best docs,are neuromuscular found at teaching
hospitals and universities. I go to George Washington neurology and have
finally found my terrific doc!
Lori, where do you live? The bad thing about the horrible disease is there are so few treatment places for it. I am really lucky to live in NC in a town where a physcian is who treats this disease in a teaching and research hospital. Have you contacted the CIDP ppl online? Joined their website? They will send you a lot of information and can maybe direct you to help also…
Thank you. I don’t need any help about info on the CIDP, but about the website. Im so sorry. I couldn’t find anything anymore that looked familiar on the site. Thanks for the info, though. I am back and forth from Az to the Ft. Bragg and Camp Lejuene area a lot!
My Dr. studied under Peter Dycks, but has recently retired. He is who diagnosed me in 1998 when few even knew what CIDP was. A great Dr. is a treasure!
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Hi! YES!..I have the same! I have severe muscle wastage in both calves, dropfoot in left side and bad balance which causes me to fall and walk like I am drunk☺️
Hi annette, do you have anything you do that helps your balance?
Hi! Canadiangirl! I have IVIG…every 6 weeks which I have over a course of 2 days…19 bottles in all…it helps my legs a great deal which helps with the balance…
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