nerve healing process

I have definitely received successful treatment, but what is best for one person is not the best for all. There is a great deal of variation in CIDP and my case is atypical.

Why does your doctor oppose the stem cell treatment if you are not getting good results from all the standard treatments? Have you sought a second opinion on that option from another neurologist?

Hello Lori: I have waited to contribute my own Rituxan experience until I had something clear to say; now may be the time, albeit with mixed news. I had some neuropathy (lack of sensation, no real pain) in one foot back in 2011. A few weeks after hip replacement in March 2012, the loss of sensation spread to both feet, than upward to the calves, also finger-tips. I first assumed this was due to inactivity after surgery but in mid-June I went to a neurologist who did three types of tests to quantify the nerve damage: clinical, by “sharp”, “cool” and “vibration” skin application; external electrodes to measure strength/clarity/speed of a transmitted pulse; and internal needle electrodes to observe active inflammatory irritation. He had me in hospital 2 days later for four days of gamma globulin IVIG for “an auto-immune disease, to be identified by blood and spinal fluid tests”. Those tests strongly indicated anti-MAG (titre 40,000); not CIDP, as total protein was not elevated. So IVIG, while it may have helped delay the deterioration, was judged not the best treatment.

3 options suggested to treat anti-MAG were apheresis, steroids or Rituxan. Stem cell not mentioned, maybe because I am elderly. I chose Rituxan as being the only option that might stop the disease in one treatment, and we could fund it from our nest-egg (Medicare would fund for RA but not for anti-MAG). In July/August I had 4 weekly infusions of 700ml each and then we waited. In September, I had the clinical exam repeated, not the electrical tests, and appeared roughly stable compared with June.

This week, I had repeats of all the tests done in June. Clinical tests showed the sensory nerves “about the same” but both types of electrical tests on the motor nerves were disappointing. External probes showed some slowing and loss of signal compared to June; that alone would not be so bad, as I had not started Rituxan in June. But the needle probes clearly showed ongoing inflammation attack on the motor nerves, so the Rituxan has not banished the disease. Based on this experience, I think the needle-electrode test offers the best answer to your question “Am I getting better or not?”. If there are screen “blips” when the muscle is relaxed, then the nerves are still under attack. It is so hard to judge ones own progress – good days, bad days…

My other, and maybe best, advice is that I have found physical therapy of great help in handling the disease effects. My therapist proposed (with support from the neurologist) a course of gait and balance training to improve “proprioception” and after three months my walking and standing ability is much improved. The idea is that the brain can learn to use signals from other nerves in ankle/knee joints that are not so affected by neuropathy and which the brain previously ignored. I wish I could drive again, but I can not feel the pedal pressures. Will consider hand-controls if I do not improve.

My neurologist is arranging a “second opinion” from a local specialist, though he still thinks the diagnosis and treatment plan were correct. I’ll post the outcome of that later. Best wishes – Ann

Lori:  My neurologist explained that he uses the inserted needle electrodes only in the motor nerves because the sensory nerves are too small.  The needle electrode was inserted up in the calf, with patch electrodes applied to the foot.  Then, if I tensed that muscle, there were jagged lines moving all over the screen and a lot of crackle.  When I was told to relax the muscle,  the crackling and jazzy lines diminished quickly – but he was disappointed to see the residual activity level.  He then told me that this test showed there was still active “irritation, inflammation, of that nerve” and therefore the auto-immune damage was still occurring.

Remember that, so far as I know, I have anti-MAG and not CIDP – so I am just assuming that the message from the inserted needle test applies to either condition.  Ann

A

Hi Lori,

My brother was diagnosed lin March 2012 and has had many ups and downs. He went from not being able to stand in 1 spot for 5 seconds to most recently 2 minutes. This has been a gradual progression and he has still a ways to go.  His grip strength is still weak, but the dr explains that this will take time. 18-24 months. His treatment has been 36 plasma exchanges wit prednisone 50mg tapered down to 20 this week. He has also been in imuran for 4 months (200mg) and most recently gets Solumedrol drip after his plasma. Plasma was originally 4 times a month, then 2x then 1x. He did notice some weakness starting to set in and the dr immediately put him back on 4x a  month and he has noticed some change in energy.

As an outsider i can’t begin to imagine the frustration you are going thru, but i can say that patience is necessary. Ultimately you know your body better than anybody else. If you feel a progressive weakness you need to advise the dr to revamp the treatment plan. There will be good days and bad, but keep an eye on the amount of bad.

I have read many articles on nerve regeneration and the consensus is time. (24 months). Some people say that axons will regenerate slowly even after 4 years they notice things getting better.

what condition are you in now? are you able to function alone?

Larry

Lori – don’t wait if you are even considering SCT. I sent my application in on June 6 & first evaluation appointment was mid-September. My diagnosis was confirmed 7 we applied for insurance coverage and got the 1st formal denial in early November. At that time the self pay option opened up and I opted to go that route while we continue to appeal the insurance decision. AFTER  I paid then the pre-testing started – last week Dec 3-7. As the results of those tests appear to be ok I am now scheduled to be SCT #38 starting in Mid-January.  My point is starting the application process is not a point of no return it is just the inquiry to see if you even get invited to Chicago for the confirmation evaluation. Lots of time to change your mind. I moved fairly quick with the decision. 1st symtoms August 2011, major loss of strength & mobility by Dec. 2011, went thru steroids with little improvement then to IVIG with limited & cyclical improvement even with weekly infusions. The CIDP specialist neurologist at NW (Dr. Allen) advised there were some other treatment courses i could try but they to were designed to fifght the symtoms not fix the route cause. I had full blown diagnostics done at Mayo in Jacksonville FL as I had used them for the past 15 years of so for executive physicals & they had great records of my unremarkable overall health over that time. I did consult again with my Mayo neurologist & he was supportive of the SCT investigation if I was unresponsive or had limited response to the current treatments. My local neurologist is not in favor of the process as he feels it is too risky but respects my decision.

In a nut shell, if your are seriously considering SCT apply now. the timing will allow you to see if your new treatment is working if you have the opportunity & are accepted for Dr. Burts program. Any readers try this link if you desire more info http://www.stemcell-immunotherapy.com/

larry…..with all the PE treatments how is your brother now?….have not heard of anyone else having that many PE treatments for cidp.

Cathebt,

Just as a comment, I used PE as part of a combination therapy for a bit over five years.  I lost count of the number of treatments, but it was on the order of 250.

~Mark Ens

Hi Cathebt,

My brother has improved somewhat in his walking and stability. He is able to stand for 5 minutes without needing to hold anything. (the feelings in his toes are starting to come back slowly which is helping). As for his hands his grip strength has gone up from 5 to 17, still a ways off from the normal of 90-110. This is slower, but we hope that it will strat to improve. He is approaching the 12 month recovery mark in March.

Mark, how did you find the PE? Are you significantly better than you were 5 years ago? I’m interested to understand the satges of recocvery. Anything will help.

Thanks,

Hello Larry,

Unlike your brother, my disease course was a moderately quick decline to a point, and then a very rapid decline after that.  Treatment, though, would arrest the rapid decline and promptly return me to nearly full function in a week or so.  I am considerably better than I was five years ago.  That I am significantly better now, though, does not mean that my treatments necessarily caused a reversal of the disease, just that they kept the effects from being more severe and long lasting.  My neurologist and I believe that I suffered very little damage to the axons and nerve bodies and that my myelin, while not perfect, is in decent condition.  Based on your descriptions, I think your brother may have also suffered from axonal damage.  His recover will necessarily be slower, just because axons regenerate more slowly than myelin.   I am afraid, therefore, that my experience and your brother’s are so different that what worked for me may not work for him.  Still, nothing ventured, nothing gained.

I found PE to be very helpful, even essential, in maintaining function and almost benign in administration.  I had a central venous access catheter, so the process of the PE itself was painless.  It was time consuming when I was getting it several times a week, but because I had such good response, it was well worth it.  Maintaining the catheter was essential, and I did so with vigilance.

Godspeed in finding an effective treatment
MarkEns