Variants

There are only a few variants that have names…Lewis Sumner is the only one I can think of off hand though.

My daughter has a strange variant – it doesn’t have a name. We just call it The Emily, LOL.

She had cranial nerve involvement, right eye paralysis, distal & proximal weakness, what she called strawberries & nuts (thinking neuropathy & charlie horses?), autonomic nervous system involvement, elevated spinal protein levels & a practically normal EMG – showed only very slight demyelination.

I think cidp has so many ways of presenting itself that the Dr’s just call each case “atypical” cidp

From what I’ve read there is now thought to be at least 17 “known” varients of CIDP.. however like the others mentioned, the only name that I am aware of is Lewis summer/madsam .. I don’t even think most neurolgoists know the names of the other varients.. I like Emily have cranial nerve involvment/double vision/speech/swallowing, proximal and distal weakness and autonomic involvement as well… with also only a little demylenation..so I am classified as “atypical” cidp … I have yet to hear about many that are “typical” however 🙂

Someone with MS once told me that her illness is so variable that it is like having a different illness every day. I feel the same way about CIDP. No two days have ever been exactly the same for me with this disease.

Bny – Something just dawned on me. If you have similar symptoms to Emily maybe you need a similar treatment plan. Emily’s treatment plan, in the beginning, was intense – to say the least. She required IVIG 2-3 times a week. I know Dawn mentioned, in another thread, about you doing loading doses for awhile…based on your symptoms being so similar to Emily’s, I would have to agree with her.

In the other thread Dawn said your loading dose should be 114 grams. If it were me, I would request to do a 5 day loading dose – getting the whole 114 grams in is important. Then I would request to do 30 grams (it’s just easier to round up from 28.5) weekly. Emily has always gotten 20 grams at every infusion &, with doing IV’s now, it takes a little over 3 hours each time. If you can set up home care to come after you get home from work then it won’t really be that big of an intrusion. Just order pizza on treatment nights & watch movies.

Kelly

Thanks so much Kelly (my name is actually Kelly too!).. I feel like the IVIG might have finally kicked in a little more yesterday evening.. though still not to the extent that it did after that 2nd one, I’ll take what I can get!!! I might mention doing that type of schedule to my Dr.. I am not sure how open my Dr is to hearing a patients suggestion….. but when it comes to my health and life I’ll for sure give it a try!!! I can’t tell you how much I appreciate yalls help! I LOVE the idea of having the infusions at home!!! I am going to see what I can do to get that arranged too! I spent NINE hours at the infusion center the other day, and it’s an hour drive, and more back due to traffic! It was a 12 hour day and I was WIPED out, plus drinking all of that water makes for a seemingly even longer drive !!!

Bny (Kelly) –

Do a Google search (or a search on the old forum) for Dr. Dyck out of Mayo clinic. Ask your dr to either get in touch with him or to listen to his podcast. I think he has the best treatment plans for CIDP.

If your dr won’t listen to you then I think you might want to find another one. It’s YOUR body! You know how you are feeling.

Kelly

Thanks Kelly.. you are right! I have never been one to go get another and another opinion for things, but just getting to this clinic (the ALS/neuromuscular clinic at the university here), I think I saw 6 or so neuros, and then in the hospital at least 6 more, so I have seen A LOT of dr’s!!! This whole thing interferred in my life so much, I realized I had to take matters into my own hands as much as I could.. couldn’t just “wait and see” what happens, like some of the dr’s thought I should do!! I will look him up and mention it to them! THank you!

What I am really curious about: what are the results / effects of the treatments for people with ‘atypical CIDP’? I was diagnosed MADSAM / Lewis-Sumner / Multifocal CIDP (allowed to choose myself). The dexamethason / prednison does not seem to help a lot.

Hi Willem my husband who has MADSAM has been treated from the beginning with IVIG. His neuro. did introduce Imuran during his first six months after diagnosis. Within two weeks of starting Imuran he was in hospital with sepsis. So since 2007 he has been on 100 G of IVIG every 3 weeks. In the beginning before he learned the ropes (on this forum) he had a lot of bad incapacitating headaches and flu like symptoms. Forum members advised him to drink lots of water pre IVIG and during and to pre medicate with Benydryl and Tylenol and closely monitor the flow rate. Worked very well for him to follow those tips. My husband has mostly motor symptoms and very minor sensory symptoms. I know that people who are diagnosed with MMN (multi focal motor neuropathy) cannot take steroids. Hubby has not been on steroids as he refused them due to risk factors. He is 64 yrs. old and has minor cataracts, elevated blood sugar so those symptoms would be exacerbated with the steroids. So far he has been lucky to be allowed to carry on with IVIG as it is horrifically expensive.