20 yo daughter diagnosed with CIDP, we need help
 

Hi everyone,

My daughter was diagnosed 10/2013 with CIDP. She is 20 years old and is currently a music performance major. She plays a stringed instrument. The majority of her issues are in her hands. She is devastated by the diagnosis. She has loved playing since she was 10.

She has had nerve conduction test, an MRI, a CT scan, a lumbar puncture and has given over 25 vials of blood. The neurologist thought in the beginning that perhaps IVIG may help her. After all of the testing, he decided against it. He said there wasn't anything he could do, gave her a sample of Lyrica and said to come back if it got worse. We call it the "sucks to be you" diagnosis. She refuses to take the Lyrica.

I took her to a DO that is known for his unconventional ways. He initially prescribed MetanX and Deplin. She had to discontinue the MetanX due to high B6 levels in her blood (43.5). Her B12 levels are high at 1382. Iron and TIBC are good, Saturation is high at 59%. Ferritin is low at 30. She is a vegetarian and is supplementing with iron. Her storage Vitamin D is 69, she will have labs next week that will test her active D.

Recently, she was diagnosed with hypothyroidism. She is currently being treated with T4 and T3.

She has a double mutation with the MTHFR. We attempted twice to do the 23 and me testing, but her saliva does not contain enough DNA to analyze. She was only tested through blood.

I want to help her. I don't want to believe that there is nothing that can be done. I see the use of stem cell transplant. Dr. Burt's treatment includes chemotherapy. I'm scared of chemo. There is a center in Panama that does the stem cell without chemo. I'm looking into that.

I would love any suggestions or advice. I would give my last breath to help my daughter.

Thank you all so much. Knowing that there are others who share our concerns means the world to me.

Kay

Also, we are in Texas.

demand IVig from your neuro...if your daughter's cidp dx can be confirmed IViG is drug of 1st choice

do NOT understand why neuro did not try it immediately after dx in 10/2013

IVig is worth a 6 month trial if your insurance will approve it...your daughter has everything to gain from trying it

Thank you for responding. He said it wouldn't work in her case. I need to take her for a second opinion. I don't know where to go? I'm in Texas.

Kay

So sorry to hear of your daughter's trouble at such a young age. A second opinion is certainly in order. I have no specific recommendation, except to say look at teaching hospitals in larger cities. Often it is mostly covered by insurance if you have a referral, which doesn't have to come from the current neurologist--her primary care doc could make it.

It would be strange to diagnose someone with CIDP, then say IVIG wouldn't be a treatment for her. Often these neurologic issues take more than one doc, and trial & error for treatments, if her bloodwork was inconclusive. This is a great site for information.

Also, if an inflammatory condition is suspected, she should also be under the care of a rheumatologist. Again, a teaching hospital will have the most current and assertive approach. Ideally, both specialists are at the same facility and are communicating with each other.

We will have to look outside of where she is going to school for a second opinion. All of the neuros on our insurance are in the same practice. If I take her out of town and the new doc orders IVIG, I'm concerned that we would have to keep going out of town for treatment. It would be so much easier to be able to have it done at home.

You mention inflammation. Are you referring to her joints? I never thought of a rheumy before. I will look into that as well.

Thank you all again. I have started looking around for a second opinion. She is in an odd part of Texas, nothing is really that close.

Kay

Do you feel the CIDP is a correct diagnosis? I there a definitive test for that?

I am curious since you mention most issues are in her hands.. and was wondering if all types of repetitive strain have been ruled out?
Specifically Thoracic outlet syndrome..
I suppose it could be possible to have both the CIDP and some sort of RSI ...
Can you describe the symptoms she has with her hands?
Any neck/shoulder tension, or forward head posture?

Kay

get your neuro to refer her to another neuro for a 2nd opinion preferably one who has seen other CIDPers and have treated them with IVIG successfully

there are 2 CIDP centers of excellence..,one in Dallas and another in Houston

check out gbs-cidp as well as igliving websites as well

IVIG is treatment of 1st choice for anyone with a confirmed CIDP dx...don't fool around any longer...the sooner you can get your daughter on IVIG, the better the prognosis

since it has affected your daughters hands for the most part, her symptoms are suspicious of cidp madsam, aka lewis-sumner syndrome...that was/is my dx and ivig halted the progression for me after 22 ivig treatments over 13 months...am now in remission and hope to remain so....have permanent sensory and motor deficits and muscle atrophy but ivig rebooted my immune system and has halted the cidp progression

I honestly do not know if this is the correct diagnosis. From the EMG/NCS test of her arms, this is the summary:

1. Electrodianostic evidence of a moderate median neuropathy at the
wrist. This is conistant with with a clinical diagnosis of carpal tunnel
syndrome.

2. Electrodiagnostic evidence of peripheral polyneuropathy affecting both
sensory fiber involving bilateral upper extremities. Ployneuropathy also
affecting bilateral sural sensory fibers.

3. No electrodiagnostic evidence of left or right ulnar motor neuropathy.

A week or so later, she had her legs tested. They were not nearly as severe as her arms. I do not have those results. I also have not seen the results of the MRI or LP.

Her symptoms in her hands, are pain, weakness, unable to grip items (drops them), feeling of needles being inserted under her finger nails. Her hands are mostly cold and fingers often numb. Just recently she has the sensation of ants trying to crawl out through her feet. She is also very fatigued and seldom feels well.

The doctor verbally told is it was CIDP. He referred to it as a demylinating disease. He said that he felt that the myelin sheath would regenerate. I wanted so much to believe him.

I know now that whatever is going on is not getting better on it's own.

I need to get her help soon.

Kay

If you would like to read about TOS and chronic RSI's, just for your own knowledge base.. here is the link to our TOS forum, be sure to check out the sticky threads , you might find something that helps with her dx.

I hope the drs aren't focusing on any single dx, and possibly missing secondary conditions...

I don't know if any expert PT has been tried yet?
Often advanced PT's can do a more thorough evaluation than a dr that does not do any "hands on" assessment.
Especially if there is possible posture or repetitive strain issues.
I would try it at least to find out if some of the symptoms can be resolved..

Sural nerves are sensory nerves in the lower extremities. The fact she has neuropathy in upper & lower extremities could be CIPD--the inflammatory process is not in the joints but in the nerves themselves. Do you have neuropathy history in other family members? It also could be a hereditary neuropathy. Genetic testing may be worthwhile if that is suspected.

I understand not wanting to start her with treatment far away from home, but seeing a specialist to help diagnose her would be worth it--they often are willing to consult with your regular doctors to direct treatment.