CIDP – Locating a specialist
November 8, 2007 at 9:30 pm
You did not mention where you live. If you call the foundation tommorrow, they can get you exactly where you need to go.
Dawn Kevies mom
November 9, 2007 at 9:28 am
If you call the number you posted, they can hook you up with a doctor and a liason in your fathers neighborhood. Since Ohio is an option, ask the foundation for the number of Kasandra Ulrich. She is the regional director in that area. She has helped me more than you can imagine.
If you have any questions any, ask and you will get answers, This disease is very complicated and not all doctors know alot about it. That is why it is important that you make contact with a doctor that has experience with this illness. Time is of the essence!
Dawn Kevies mom
AnonymousDecember 5, 2007 at 11:22 pm
[QUOTE=Dawn Kevies mom]You did not mention where you live. If you call the foundation tommorrow, they can get you exactly where you need to go.
Dawn Kevies mom[/QUOTE]
Dawn : I am not sure how to do this to get the info out to everyone so if you see this is not the right way please let me know. I did contact the Foundation and talked to a couple of people and was told to contact a certain person in Ohio although we are formerly from there we cannot go that far. It was only to talk to someone with some knowledge and maybe she could guide us. Well she is busy with sick family and to make things to the point we have called people and doctors and tried to get my husband into a doctor he has found through a support system but to no avail. We are close to Knoxville Tn. and cannot have that doctor as my husband already saw someone in the same office and their policy is to not change doctors. Unfortunately policy takes presidence over someone health and life. At this point I have been hit with a brick wall. This has been going on for about 22 months and getting worse. Although no one has really diagnosed him with any type of neuropothy other than perphical(sp?) from what we have read he thinks he has cipd but until we can find someone here I do not know what else to do. Although I am leaning on going to some other area. Not being from Tennessee until the last 2 and 1/2 years we do not where to go.
Can you or someone reading this please give us some insight here.
AnonymousDecember 7, 2007 at 5:50 pm
I live in Knoxville and have found a splendid neuroligist here. He was reccomended to me by a nurse at Fort Sanders Hospital. I am retired and would be available to talk to your father at any time. I have been to Mayo Clinic twice; and found this doctor to be more perceptive than any other I met there. My e-mail address is [email]email@example.com[/email]. My cell number is 865-300-5132. I’ll be glad to advise and assist any way possible.
AnonymousDecember 30, 2007 at 3:17 am
[QUOTE=Dells mom]I don’t mind talking with you. I have a 3-1/2 year old with cidp so some things could be different.
My cell is 228-282-5050. Please don’t call later than 8:30 at night, central time.
The daytime is the best time to reach me.
Thanks Lori: We have since gone to a Doctor (believe it or not ) in Knoxville and as of Friday the 28th he had a ct scan, blood work, and a spinal tap. We were finally refered to him from the first Neurologist my husband went to (the one that would not let us see his partner) If this new dr. does what he says it would be great and if not we will look further. He claimed he will improve him before March in which we are taking our grandchildren to Disney in Florida. Said we will not need a scooter. It has been 22 months and after giving the Dr. all the history he agreed with us that he has cidp. At least for now until results are in for sure on the diagnosis. No feeling in his feet and partially us his legs. Losing muscle tone in lets. Hands starting to get tingle. Hope it is not too late. We were concerned about going out of state or even to Nashville as treatment may cause us to travel for long periods. We are new to this but would go anywhere if things do not improve . We tried talking to the foundation and they did not know of anyone in our area . One person suggested asking our insurance Co. They do not offer suggestions only doctors who are in our network. Was very disappointed with her answer.
I will give you a call if only to find out what to expect. We may have to also have a biopsy of his foot nerve but realize it is permanent. We read somewhere that just a biopsy of the skin can do the same. Does anyone know if this is true?
Thanks for your offer. Will try and reach you tomorrow (Sunday)
December 30, 2007 at 2:26 pm
I am so sorry I did not respond to your original post. In any event, many on this sight express that they WOULD NOT DO THE NERVE BIOPSY IF GIVEN THE CHANCE AGAIN. We did not have one, so I cannot comment. But a cheif complaint is long term pain at the site. If you have an elevated protein in the l/p and the ncv/emg is indicative of a cidp dx, I would not even bother with the nerve biopsy.
It is true, some times there are miraculous results from ivig. My son is fortunate that he experiences those results, w/in 24-48 hours of ivig, he can go from barely walking to playing football. But I feel I have to be honest regarding the disney trip and no scooter. Some do not have those results immediateley and it takes several rounds of ivig. Furthermore, you mention that your husband has weakened in muscle tone, pt before the trip may help.
Regarding your comment
i hope it is not too late. With cidp it is never too late. Treatment will always help. You just have to be patient as there is no time frame for recovery, it comes when it is ready after a period of healing. My son’s debilitation was 6 months at most and he was still able to walk. We still have stregnthening to do in his ankles and wrists, but he improves daily.
I do not know if the doc explored treatment possibilities with you, but ivig is usually the first line of defense, given in loading doses and then maint. doses. The problem is figuring out your bodies frequncy need of the ivig. If ivig alone does not work, steroids are introduced in conjunction. Prednisone I have read sometimes works against people and makes them weaker, others are fine with it. Some use solumedrol with ivig. As a matter of fact, a nice girl named Gab111 on the members list is using that combo I believe and she is happy with her result. I bet if you send her a message, she will respond. I think you previously mentioned you might have difficulty posting, so I will alert her for you and tell her about this thread.
If these combinations do not work, people try immunosuppressants such as cell cept or imuron and many others, you should research those. Good luck and best wishes for a start to the New Year with a treatment plan that works for you.
Dawn Kevies mom
Besides, a scooter would make it easier for all of you, grandpa can let the tired little ones hitch a ride, and scooters/wheelchairs get front of the line entrance along w/ their group. There is no pressure on your husband to keep up the pace if he is not able. Maybe you could start exploring the idea to him now to get him at least thinking about it. Something else to consider if still possible, purchase travel insurance, besides the regular lost luggage rental car stuff, it also allows for full refunds in the event you have to cancel, but more importantly, it allows for medical to be covered in the event you go to a hospital that is not on your plan. I purchased this when we went on a cruise last year just in case.
December 30, 2007 at 2:29 pm
I noticed some how my post was split up, please excuse the confusion when reading it!
AnonymousDecember 30, 2007 at 2:45 pm
I agree with Dawn’s comment NO NERVE BIOPSY. I was advised, on here, not to do it, but my Dr. at the time insisted. First the surgeon started cutting before the local took hold. Had to DIG for the nerve, had infection for 3 weeks, alot of pain and an ugly scar. Bad experience. Trying Mayo Clinic next in Feb. Regina
AnonymousDecember 31, 2007 at 9:23 am
I would agree with the others on the nerve biopsy. I have read quite a bit, and to me it’s a question of “what’s the point?”. If you have other indications of CIDP, try treating that first. Thanks Dawn for referring to me as a “girl”:)) I’m 47 but will take the youthful comment any time!! Yes, I had a first round of IVIG in November with about 6 hours of immediate (sort of) results that went away when the treatment was complete (4 days). I had a second round the week before Christmas and he added Solumedrol and I am still ambulating better than I ever have although I can feel some of it wearing off at this point. It is trial and error, and a LOT of patience!!!!! Ask any questions that you may have here as these folks have been quite helpful to me as well…take care Gabrielle
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