newbie with questions
 

Hello everyone! As my thread title says I am a newbie and have posted on the newbie welcome board. It was suggested by glenntaj that I come over to this board and post in detail the problems that my husband has had and is having. I should state at this time it is my hubby of 33 yrs that was just recently (8 weeks ago) diagnosed with CIDP. This is a very long story and I hope you all bare with me. But we truly are at ropes end and hoping for some suggestions, stories , and hope from those of you that have been thru this. Here goes.
In May of 2007 hubby was diagnose with stage 2 B-cell lymphoma high grade aggressive with folicular involvement(tumors erupting all over his scalp)After 8 rounds of Chop-R chemo, he went into remission and has remained there thus far. At the time of his chemo he experienced the neuropathy caused by the chemo but it disapated within 6 months of stopping said chemo.

In August of 2008 he was diagnosed with stage 2 melenoma on his upper back and lower neck. He had to have surgery to remove this including one lymph node. It took a 2-3 mm depth and 12 inch long across his back to get it all. He has not had a recurrence at this time. No radiation or imuno therapy or chemo was given for this.

In September of 2009 he was diagnosed with squamish cell carcinoma under the toenail of his second toe with resulted in amputation of toe to the foot.
Again, no radiation, or any other type therapy as they claimed to have gotten it all.

In the middle of all of this, he began to have symptoms of the neuopathy again. Pain and numbness of both lower legs and feet, and also his lower arms and hands.
Along with these symptoms, he has began experiencing severe and extreme cramping in his legs and hands. To the point his limbs would disfigure and distort into something that looks like a contortionist would do. He also began stumbling , falling, choking, drooling.

We have been seen and tested by neurologists, oncologist, rhuematalogist, and orthopedic doctors. I cannot even begin to list the test that he has had, including numberous blood test, pet , ct, mri's, nerve conduction, muscle byopsies, removal of lymph nodes, eeg's, and others which I cannot pronounce much less spell.

With his recent diagnosis, they put him on 40mg of prednizone daily and 350 mg. of soma 2x daily. With no relief of any symptom. They are now talking about doing IVIG therapy.

One of the biggest questions we have right at this moment is about the muscle cramping and spasms. We have noticed there is no one else mentioning this symptom with CIDP. And are curious to know if anyone does have these symptoms. So far they doctors don't seem to be so concerned about that part, but it is the part that gives him the pain. His numbness does not give him pain, but makes him so exhausted.

Any help in the form of your story, suggestions, questions for us, would be so much appriciated.

I can't give you an idea of what is wrong with him, however, baclofen is a drug used for spasm. Perhaps that can help. It seems that his problems with balance and the movement disordre could be related to brain dysfunction. Have they done MRIs of the brain? Has he had a recent PET scan?

Also, I hope they can start IVIG for him soon, as that may help. I get IVIG and have had no side effects from it.

I am so sorry that you and he are going thru such a difficult time.

And, again--
 

--I am suspicious of the CIDP diagnosis. Not saying that it isn't correct, but there are rather specific clinical criteria for this, including evidence of specific types of demyelination that is traceable upon biopsy or serological evidence from autoimmune attack, as well as a fairly distinctive pattern of reflex abnormalities. I can say, however, that muscle weakness/cramping/spasm is a common symptom of autoimmune demyelinating neuropathies--in fact, in the acute form of CIDP, which is Guillain-Barre syndrome, temporary paralysis of limbs is not uncommon; fortunately your husband seems to have escaped that:

http://neuromuscular.wustl.edu/antibody/gbs.htm#cgbs
http://neuromuscular.wustl.edu/antib...mdem.html#cidp

As you can see from the second link, there are many autoantibodies that can be tested for that might point to another clinical entity, though many of the treatments are similar

Considering the number of cancers he's had, he should be exhaustively tested for paraneoplastic syndromes, which are more common than most doctors think:

http://neuromuscular.wustl.edu/nother/paraneo.htm

Do you have results from all his tests? You can list them here, if you like--we tend to be collectively very good at interpretation here.

I'd also compare them with the Liza Jane spreadhseets for comprehensiveness:

www.lizajane.org

Muscle cramping also can be due to faulty calcium levels and poor magnesium intake.

When these two don't have proper ratio in the body all sorts of weird things happen. Too much calcium with too little magnesium leads to cramping muscles.

I have a magnesium thread here:
http://neurotalk.psychcentral.com/thread1138.html

Also very poor levels of Vit D can impact calcium absorption, and lead to many problems-- pain, and poor calcium levels because Vit D is critical for calcium absorption. Low Vit D is connected to cancer too.

Please watch this video:
http://neurotalk.psychcentral.com/thread92116.html

Prednisone upsets many nutrients in the body with chronic use:
http://www.chiro.org/nutrition/ABSTR...steroids.shtml

When people have very serious treatments for cancer and other serious conditions the drugs used do have an impact on the body. Many doctors do not have the training or understand these effects, and that is why I post here about them.

And lastly you need to find out what his B12 level is. It should be above 400-500. Get those numbers when you have the test.
Low B12 impacts neuro functions.

Your husband is going thru alot! Please read here carefully, and perhaps more than once, so you can get a gist of what is possible that you can improve.

Hi, just a note in case this might be helpful. I am researching the treatment for autoimmune issues called low dose naltrexone oe ldn, and in the process stumbled across an description of a condition loosely referred to as "Stiff Persons Syndrome".

It manifests as muscles torquing and cramping severely, sometimes enough to injure joints etc...Described as rather unique among neurological diseases. Evidently any sudden noise or stimulation becomes a trigger. Often it shows up in patients with Diabetes mellitus, thyroiditis, and a few other disorders. Considered to be an auto immune disorder. Antibodies against glutamic acid decarboxylase (GAD) a neurotransmitter, are involved in this disorder. Sometimes related to type 1 Diabetes also Celiac Disease.

I wish you both better fortune and some ease on the journey, Best Wishes TT

Lets hope Mrs. D. is offering the most obvious and simple solution and that the magnesium will correct the problem.