Second Nerve Conduction Study, What to do?

It’s ok to look up information on the internet so that you can ask informed questions of your neurologist, but you should try to avoid self-diagnosis, especially convincing yourself of the worst when you do not have the expertise or the information to make such a judgment. I know that’s difficult.

Also keep in mind that there is much variation with CIDP, and there are several treatments. Treatments which are effective for some may not be effective for others. It is not unusual for the treatment plan to be adjusted as the neurologist tries to determine what is most effective for a particular case. It seems that your case is slowly progressive. If other treatments fail to halt the progression, it may be that you will be eligible for the stem cell treatment being studied at Northwestern. Several people here have reported excellent results from this. The trials should be completed in just a few years, after which it may become more generally available. In the meantime, try to find the bright side in every situation. Do what you can to keep your spirits up as you fight this disease.

I have some axonal damage from the knees down which may be permanent. Whether it is or not, I don’t let it bother me. I just do the best I can with the legs I have, which is good enough for most purposes.

GH

As for the drugs, these are a standard treatment for CIDP. I toom prednisone for about a year, starting at 60 mg (I think) and tapering down to zero. I had no side effects from this that I was aware of. At the same time, I started taking mycophenolate mofetil (CellCept) at 2000 mg, and I still take that with no apparent side effects. I’d like to be taking no drugs too, but I am satisfied with my current treatment.

JGL,

Ignore my previous question, I have my answer.
The real question is what do they mean by worse? I can think of four possibilities:
the demyelination is worse, but there is no axonal damage;
the demyelination is worse and now there is axonal damage;
the demyelination is equally severe and now there is axonal damage; and
the demyelination is improved and there is now axonal damage.
We can rule out the first one, because your results suggest axonal damage. Given your improved symptoms, it seems like you could rule out the second and third. That leaves the fourth or a bad correlation between symptom and test. While not good news, it will show the neurologist that she should be more aggressive in her treatment. If the IVIg is not burdensome, then it makes sense to try more IVIg more often and see how you respond. If you respond well, then the typical protocol would not add immunosuppressants or corticosteroids just yet.

If you do need them, you have to weigh the risks, which is something you need to talk about with your doctors (all of them), your family, and your supporters. Prednisone has several bad side effects, especially if taken over the long term (see http://noairtogo.tripod.com/prednisone.htm) . The side effects are not specific to prednisone, but are present with all of the corticosteroids, varying only in degree. Some of the immunosuppressants are known carcinogend, meaning that they can cause cancer in humans, which is not to say that they will cause cancer in every human. In my case, I decided that function now was better than long life, so I took the risks and did both. I ended up with cataracts and became pre-diabetic from the steroids. I have no regrets, though.

~MarkEns

jgl, drug treatment doesn’t just come down to a choice between steroids or immunosuppressants. The steroids are not advised for long term use, so are tapered down over time. Mycophenolate mofetil does not have an immediate effect, so takes some time to work. That is why I started on both. The prednisone was tapered down to zero over about a year, and I am still on the mycophenolate. I have had no noticeable side effects from either.

JGL,

GH is right, immunosuppressants and steroids are not mutually exclusive. As he pointed out, a usual treatment course would use steroids while waiting the for immunosuppressant to take effect (3 to 6 months for mycophenolate mofetil (CellCept) or 6 months to 1 year for azathioprine (Imuran), with the steroid taper starting sometime during the window.

As for side effects, I took both CellCept and Imuran and did not suffer noticeable side effects from either. CellCept did not seem to work for me, but it does work for many. Imuran worked for me. It might have made me somewhat anemic, but not the point where it seemed to have an effect on my daily living. If your doctor wants you to take Imuran, it would be a good idea to be very closely monitored for the first month or to have a TPMT (Thiopurine methyltransferase) test done to make sure that you can metabolize Imuran properly.

Best regards,
MarkEns

A nerve biopsy is used to help nail down the diagnosis. In typical cases, it isn’t often necessary. Since your spinal fluid test supports the diagnosis, I don’t know why you would need one. I’m not saying you don’t, understand, just suggesting that you ask your doctor about it.

I understand your feelings — this is no walk in the park. I, too, kept descending after initial IvIg treatments. Ultimately, I had plasma exchange which turned things around for me (along with drug treatments). Try to focus on the positive. It is possible to recover from CIDP and should expect to get through the worst and start recovery. I was paralyzed below the neck by CIDP. Now, less than two years later, I walk without any assistive devices. This will turn around for you, too.

jgl i too just recently started immunosuppressants (rituxin) had no immediate side effects. It is too soon to tell if i will have any long term. I have tried prednisone, it did not work for me. I thought ivig was working because i felt better, but i continued to get weaker and all of my ncv/emg showed the disease slowly progressing.
I have mainly axonal, some dyminlation type of cidp and have had a sural nerve biopsy to confirm the diagnosis. The nerve biopsy was done under local anethesia, i was able to walk on it immediately after. There was pain in that area for a few weeks when i flexed my foot, not unbearable, completely gone after a week or so. There is more numbness in that area of my foot in a small area beside my outer ankle bone.
A second opinion is always a good idea, especially if you do not have a definite diagnosis. my own Dr recommended it for me and set me up with Dr Dyck at the Mayo. Hopefully the prednisone will work for you but if it doesnt just know there are other treatments available. It’s just a matter of finding what works for you.

JGL,

Is there any reason your neurologist gave you for not providing more IVIg? Are there financial considerations for you (large co-pay, insufficient sick time, etc)? Do you have bad side effects (days of killer headaches, days of flu-like symptoms, renal failure)? Following a standard protocol, you would get 2 g of IVIg per kg of body weight, spread over 5 days. You would then get 1 g/kg every 3 to 4 weeks until you were stable. Then either the dose would be reduced or the time lengthened. Have you had a protocol like that? If not, encourage your doctor to try it before going to steroids. Have her read this document: http://www.pnsociety.com/Guidelines_CIDP.pdf, especially pages 225 and 226 (no, the document is not that long; it is an article in a journal). Even though I took steroids, and have no regrets about doing so, I would try to give the IVIg a better shot that it looks like you have had. If IVIg does not do the trick, I would consider plasmapheresis, then steroids.

Godspeed in your treatment,
MarkEns

jgl No, i do not have the anti-mag type cidp. My symptoms are very slowly progressive, no pain, distal, no autonomic nerves affected, sensory and motor involvement, predominantly axonal. I do have an identifed anti-body–possibly paraneoplastic, but so far after extensive testing there has been no cancer. The abnormal anti-body is the reason my dr chose to use rituxin as immunosuppressant of choice after unsuccessful trials of prednisone,PE and ivig.
The anti-mag is detected from a blood test, i asked my dr if i had the anti mag type and she said no. I read through all of my blood tests (between hers and my labs from mayo i have had an extensive amount of labwork) i didnt see anything that specifically said “anti-mag” but she is extremly thorough, so since she said no, one of the tests i have had must have shown her that.
I dont know if the anti-mag responds to sct or not.,
there are some types of cidp that get worse with steroids.
——i find the problem with the symptoms being so slowly progressive that it is often difficult to tell sometimes if things are better or worse. Like you, i thought i was improvimg on the ivig at one time, only to find out the emg/ncv showed progression.
how long have you been diagnosed with cidp? i was dxed in june of 2009–a litttle over 3 years ago.

yes , it seems more people hare are having pretty good success getting in for the sct. I plan on applying if the rituxin doesnt work. only the nerves below my knees are affected by the cidp, i am able to walk,just not as easily or as fast pre-cidp. From my research, the rituxin did not seem quite as extreme as the sct, and i did have the identified anti-body, so figured this was worth a shot.
Funny you said that about your dr, i trust and like mine too. but today, she called me to see how i was doing with the rituxin. She commented on how maybe we could wait 9 months instead of 6 for the next one if its working??? there are people here who do it way more often. She is very conservative, I would prefer aggressive and have this cidp thing behind me.

JGL-By Wash U, do you mean Washington University School of Medicine? Just curious. My 12-year old son was just diagnosed in June of this year and is seeing Dr. Connolly in the neuro-muscular department of Washington University. I am beginning to understand the roller coaster nature of this disease and am putting a lot of faith in the knowledge of the doctors.

jgl,

First off I do not have CIDP nor had I heard of it before. I was doing a search on nerve conduction studies for my upcoming test and this site with your post popped up. I did look it up briefly to see exactly what CIDP is because of how upset you have been.

I wanted to write to you because I see this is an inflammatory disease that causes damage on that I have a lot of experience because I was diagnosed almost 4 years ago with Mixed Connective Tissue Disease and Lupus. Basically overlapping auto immune diseases that attack many parts of the body with inflammation and do much damage at least in my case.

In the last 3 years I have gone from just being tired and in a lot of pain for unknown reasons to not being able to work, many days not having the energy to take a shower and most importantly learning to put it all in Gods hands and take each day the best I can. My disease is attacking my connective tissue and what in your body is not connective tissue? When I was first diagnosed I had a few months of freaking out and my husband would say well it is not stage 4 cancer. Ok true it is not. I now have COPD – never smoked but lungs are being attacked along with muscles, tendons, ligaments and blood vessels and many other things. I now have so many specialist Rheumatologist, Pulmonologist, Neurologist, Pain Management and Ortho. So yes it was very scary, painful, life altering and eventually probably fatal but I have learned a couple of things that have changed my life for the better. I know that sounds crazy but it is true. I now know what things are really important in life and have learned to not worry about the small things. I have learned we do not have much control of what might or might not happen to us but we have so much more control than we think about how we deal with it.
My body does not work like it use to but it is amazing the ways I have found to work around things.

It is great to research and know as much as you can about your disease but never think it is worse case until it is proven and even if that happens you are probably so much stronger than you think you are.

I really wanted to talk to you about meds. I love steroids/prednisone has become my very best friend in this life. Does it have some nasty side effects yes sure it does but for me it is the only medication that can calm the disease down enough that I can be in less pain, get out of bed and feel almost normal again. They do not let me take it all the time but I do look forward to the periods where I get to be on it for a week or month at a time. I look at it this way if I am stuck with a disease that is already damaging and tearing up my body if there is something out there that can make me feel 80% better and give me a better quality of life ( I want it ).

On top of the regular pain, weakness, lung/breathing issues and so many others now I have a herniated disc in my neck, carpal tunnel and have no reflexes in my left arm. I have sharp stabbing pain in both upper and lower extremities with numbness and tingling getting worse in my hands and feet. They are doing many tests now and maybe my immune system is now attacking the nerves and I do have CIDP or something similar but if that comes up I will get whatever treatment I can.

Just remember that stress and worrying is one of the worse things you can do for your immune system and inflammation in your body. There are so many new treatments out there for all diseases so never give up thinking you won’t be able to get help and mostly if the time comes where it comes to a bad medication being what you need remember it might not be bad for you. If it was up to me I would take prednisone everyday for the rest of my life even if that mean a shorter time. I truly believe in quality over quantity.

I know what I am saying is easier said than done but I would like to think I can share something positive out of the last 4 years of misery but at the same time I am still a happy person who tries to live each day to the fullest. As my physical life becomes harder I notice my mental life becomes stronger. I never knew I could be this strong and I am sure you are too.

I send prayers, good thoughts and positive vibes your way.