Newly diagnosed

Hi Ev,

My brother was recently diagnosed with CIDP. FEB of 2012 and is currently at 7 month recovery stage. It is slow as he seems to have soem axonal damage, but getting better slowly. He is mobile, but needs to watch himself. His hands are the issue. Currently he has a grip strentgh of about a 3 year old.

The most important thing for you at this moment (from my experience) is to get the neuro and put a plan together asap. If you can limit the damage in the early stages it will only help the recovery process. IVIG and/or Plasma are the 1st line treatments and if they are available to you i would push to get them right away.

Most important thing is to stay positive and you will get through this.

Certainly weakness in the legs, loss of balance, and falling are suggestive of GBS or CIDP, and call for prompt evaluation by a neurologist. GBS and CIDP are generally bilaterally symmetric, so if your problem is only in one leg, it might be something else. (Actually, it could be something else anyway. Leave diagnosis to the neurologist.)

Steroids are a treatment for CIDP, not GBS, and are usually temporary.

I never took Neurontin or any form of antidepressants. (I have CIDP.)

There’s nothing wrong with meditation (I used to meditate regularly), but it is not a treatment for your disease. The same goes for massage.

Physical Therapy is necessary to rebuild strength when you are recovering. On the way down, its use is more restricted to preserving range-of-motion.

Acupuncture is placebo, although it may have some use in treating lower back pain.

Hypnosis? Why?

Forget about “aroma therapy.” Therapy for what?

Do Tai Chi if you like, but it is not a treatment for your disease. If you have a neuropathy, you need medical treatment now from a neurologist and likely a physical therapist as well. Tai Chi is an exercize you can do when you are in recovery.

If you get competent medical treatment and have the support of friends and family, I am sure you can get through this.

Ev:

Have you had a lumbar puncture in your diagnosis?  If so did it point to high protein level assosciated with CIDP?  I am going into 4th round of 5-day IVIG treatments and so far no improvement – but not worse.

RD

Ev, I had two five-day rounds of IvIg early in the progrssion of my CIDP. For some, this is the treatment of choice. For me, it provided only temporary slowing of the progression of the disease, if that. When I continued to deteriorate after the second round of IvIg, I was given plasma exchange treatments, of which I had nine. I began recovery before finishing the plasma exchange, and have been improving since.

Massage from a licensed massage therapist can be useful. When a person is immobilized, fluid can settle in the extremities, causing edema. A therapist can squeeze the fluid back out of the hands and feet. I very nearly had to have ring cut off because of swelling, but we managed to remove it. I suggest you remove any rings before it be omes difficult.

Ev, the lumbar puncture is nothing to worry about. It is best done with aid of a fluoroscope, so ask about that. As you are nervous about such procedures, you can ask for a sedative to help you relax. Don’t bother asking to be put to sleep. They won’t do that.

As for whether the IvIg is effective, the neurologist will be checking for progrssing weakness after the treatments. When I continued to decline after the first round, I was given a second round. This was about ten days or so after the first round. I could have had plasma exchange then, but I was reluctant and a second round sometimes helps when the first is insufficient. In my case, it did not. I continued to deteriorate, and crashed completely about ten days after my second round of IvIg was completed. At this point, plasma exchange was the only option, and I no longer cared what they did to me.

This sounds terrible, but keep in mind that people recover from this disease, even if they have been completely paralyzed below the neck, as I was.

I was diagnosed with CIDP in April of 2010. My neurologist immediately started me on an aggressive IVIg regimen, which I followed for the next 20 months. My last IVIg infusion was on January 9th of this year. I have remained stable off of the IVIg, and have full function. I take 450mg of Lyrica daily which is very helpful in controlling my pain. Please remain optimistic. Many people with CIDP improve, and many lead full lives.

The lumbar puncture really is not painful at all.  It does sound scary because its i the spine but it was less painful than some of my iv’s for ivig.   One thing I didnt know when I got my lumbar puncture, was that women who are  of menstruating age are prone to getting a spinal headache from the procedure.  It is a very painful headache—hard to describe.  Caffeine gave me the most pain relief from this type of headache.

the 5 day loading dose is the most common starting dose for ivig, the amount is based on your body weight.  if you are young and in otherwise good health you can get the same amount of ivig over 2 days instead of 5. I opted for this schedule due to kids, work, etc. i had no problem with getting it in the two days.  Had many loading doses following this schedule without side effects.  good luck at your appointment.

Ev:

Echoing what GGH said the lumbar puncture is nothing to fear – make sure you get it done at a hospital under fluoroscope(sp?) – I had no complications.  As far as my IVIG treatments I am in going for my 4th round of 5 next week.  I have been told by the infusion nurses that if IVIG is going to work you can see signs around the 3rd or 4 th loading regimen.  So far I have not seen that improvement – but no worse episodes.  Have leg tingling/numbness, drop left foot, fatigue easily, trouble with steps and have to watch my walking to avoid tripping and falling.  Can only walk 50-100 yards and have to rest/sit down.  You know that feeling I am sure.  I have a desk job 8-5 so getting by but if this IVIG doesn’t help I may suggest to my neuro the plasma try as GH talks about.   Hope this helps.

RD

After commencing IVIg my symptoms and my EMG test results both showed some improvement. My neurologist continued me on the IVIg as long as I continued to show improvement. Once I plateaued, we discontinued the IVIg.

the ivig, plasma x/c, or  prednisone did not work for me.  I’m currently trying rituxin (an immunosuppressant).  In my case, I feel like my brain and feet are connecting fine, but my feet are just too weak to keep up with  the rest of me. I have internal energy and lots of things i want to do—but i feel like my weak feet and calves are just not doing their part.

I have another friend, not on the board yet that im aware of.  She mentioned the same thing you said about feeling like her brain and feet are not connecting. She’s not yet diagnosed but did mention something about ganglion root???  I don’t have any info on it for you–sorry, but thought of that when you mentioned the brain/feet comment.       Regarding your comment above—you are sick, don’t feel useless.

I was grudgingly diagnosed with CDIP about a month ago by a neurologist who  said it will get worse or better. She is still however convinced part of my symptoms are in my head because as well as pins and needles in my arms and legs I also get pins and needles from time to time in my face along with a strange vibration (not a noise but a sensation) in my head. I also have a very heavy lower jaw, random short term ear aches and facial twitches are these symptoms  common do others get them?

“along with a strange vibration (not a noise but a sensation) in my head.”

This is the first time that I have heard this mentioned before. One of my symptoms described exactly. In my case it is more common when lying awake at night. Like most symptoms though, it comes and goes and appears to be getting less frequent and less severe with treatment over time. (A long time I might add)

Best wishes

Tim

sherrilyoung,

The sensations you feel in your head could be due to cranial nerve involvement.  Such involvement is relatively rare, but it does happen.  I know, because it happened to me.  My neurologist also dismissed my concerns about it.  Because the overall treatment also helped deal with it, I did not press the issue.  However, if the symptoms had persisted, I would have more forcefully insisted that we consider cranial nerve involvement.

The best way to get these symptoms to resolve is to get effective treatment for your other symptoms.  Has that happened yet?

Godspeed in your recovery,
MarkEns

Many thanks for your post Mark, I believe  you  may be right as increasing my Endep medication also helps to alleviate this symptom along with my other symptoms. I was lucky enough today to get another appointment with another neurologist next Wednesday morning so hopefully he is more  knowledgeable. I really appreciate both responses it is difficult enough dealing with this thing without someone doubting you.

sherrillyoung,

I was not familiar with Endep, so I did a quick search.  It is, as I am sure you know, an antidepressant.  Many of these drugs are useful in treating pain symptoms, but they do nothing to help with the actual demyelination or inflammation of CIDP.  Your neurologist should have started you on one of the typical treatment protocols (corticosteroids, plasma exchange, or IVIg).  That he did not suggests that he does not really believe his own diagnosis.  I hope your appointment with the second neurologist yielded more positive results.  Do not be surprised or dismayed if he wishes to repeat several of the tests.  While perhaps wasteful, sometimes the second round helps yield more definitive results.

Godspeed in getting effective treatment,

MarkEns