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Ask Dr. D. Love Your Own Question
Dr. D. Love
Dr. D. Love, Doctor
Category: Neurology
Satisfied Customers: 17510
Experience:  Family Physician for 10 years; Hospital Medical Director for 10 years.
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Dr Love Today in discussions with the Foundation for

Customer Question

Dr Love
Today in discussions with the Foundation for Pheripheral Neuropathy, the counselor and I discussed progression to large fiber neuropathy. She said that based on the facts all I can do is wait and see. And take nvc and emg every six months. She said sometimes it progresses while at other time it does not. She said large fiber is called Chronic Inflammaory Dymyliating Neuropathy.
Is large fiber CIPD. The Cleveland neuro said because of past alchol history I should be tested every six months to see if large fiber.
Is large fiber called CIDP
I wonder if the limp left arm and leg that comes and goes and the feeling of weakness in the hands a prelude to large fiber/CIDP.
Please answer
Submitted: 1 month ago.
Category: Neurology
Expert:  Dr. Phil, MD replied 1 month ago.

Hi, this is Dr Phil, here to assist you. I am Board Certified with over 10 years of experience. I will respond with my answer shortly. Thank you.

Expert:  Dr. Phil, MD replied 1 month ago.

can I help?

Customer: replied 1 month ago.
Please release the question to DR Love. he is familiar with th efacts of my case. Thank you
Customer: replied 1 month ago.
Please release to Dr Love. He knows the facts of my case. Thank you
Expert:  Dr. D. Love replied 1 month ago.

No. CIDP refers to one type of peripheral neuropathy. It affects the large fibers, so CIDP is a large fiber neuropathy. But it is a false statement to say that all large fiber neuropathies are CIDP.

CIDP refers to a neuropathy that is caused by a specific underlying cause - autoimmune destruction of the myelin sheath around the nerves. CIDP is actually not one of the more common causes of neuropathy. However, this is one of the neuropathies that can be treated with interventions to modulate the immune response, such as steroids and the IVIG that you have read about.

Most of what she said is accurate. We have already discussed that all you can do is wait and see and that periodic testing is appropriate. This also agrees with what the Cleveland Clinic Neurologist told you. The only statement that is in error is that this would be called CIDP if it progresses to a large fiber neuropathy.

If any of the current weakness was related to a large fiber neuropathy, then it would have been seen on the NCV and EMG, and while there has been a difference of opinion on whether they indicates a radiculopathy, all of them have not shown any evidence of a large fiber neuropathy.

Customer: replied 1 month ago.
There was weakness on the emgs The Henry Ford emgshowed the ulbner nerve wealness and carpal tunnel. The only reason I say this isbecause ot would explain the weakness and numbness of the left arm and leg and face. Plus the ewakness of the hands. They come and go but the weaknessi is there. If yoyu recall Itold you abut the arm and leg going limp
Expert:  Dr. D. Love replied 1 month ago.

I am not disputing the symptoms. But the studies did not show evidence of a peripheral neuropathy. The changes from carpal tunnel is not evidence of a peripheral neuropathy.

Customer: replied 1 month ago.
Its like this ca be never ending. i will take the emg in six months. Thats April 3. If there is evidence of large fiber damge I will immediately do stem cell transplant. I refuse to sit around and wait for the FDA to approve stem cell if my symptoms become progressively worse. If stem cell is the only way to reverse or repair the nerve damage I will try that. A lot of the comoanies are saying that treatment needs to be immeidately . otherwise damge is irreversible. So waiting six more months wll put me at 1 year.
Customer: replied 1 month ago.
Another thing, the Cleveland neuro did not say anything about testing for autonomic neuropathy. I forgot to mention to her, but she said nothing about it.
Customer: replied 1 month ago.
There is a chance that it will nt progress but that will always be on my mind, like cancer patients wondering if the cancer will return
Customer: replied 1 month ago.
I have to try and stay healthy and positive in order to heal my body. Otherwise the nerves will not heal if I dont eat properly and am stressed.
Expert:  Dr. D. Love replied 1 month ago.

This is true for most chronic medical problems. We never know whether someone with a heart attack ro stroke will have another until time passes. As with all diseases, you can only do what you can do, and then wait to see what happens.

Customer: replied 1 month ago.
how long do I wait. At what point can I believe that it will not progress
Customer: replied 1 month ago.
I would perefer that God brings me home. This is no way to live.
Expert:  Dr. D. Love replied 1 month ago.

You have to wait however long the symptoms continue.

You do not need God to bring you home. You need God to support you through the Serenity Prayer.

Customer: replied 1 month ago.
Thanks for reminding me of the serenity prayer. It teaches patience. Believe it or not I still have faith. I am just dissappointed to hear tthat it can progress. I thought sfn didnt progress
Expert:  Dr. D. Love replied 1 month ago.

It usually does not. As we discussed, it is only a minority that progress to involve large fibers.

Customer: replied 1 month ago.
My hands are very weak. It is hard to untwist jars or oepn bottles. The muscles n my legs chrn all the time. I am going to take a picture of my arm and send to you.
Customer: replied 1 month ago.
Oops churn . My arms and leg were pretty symmtrical before. The other night when I awaken , the left side was totally constricted . Its almost like what ever this is it has affected the left side. Sunday at dinner my face was slack. The entire face was flat on the left side. It took forever to come down out of the constriction.
How long does it take for a nerve to become dead. How long does it take for a nerve to grow. If the nerve is regenerating would it show up if I take a skin biopsy in six months.
Customer: replied 1 month ago.
Even if it progreses does it necessarily mean that it will progress to loss of movement or paralysis. Or do most large fibers result in loss of movement /paralysis.
Customer: replied 1 month ago.
My hope is that stem cell transplants become approved by FDA. That is my only hope for a cure.
Expert:  Dr. D. Love replied 1 month ago.

There is no specific time for a nerve to become dead. It can happen immediately, such as with a stroke or a profound crush injury. Or it may take years. The skin biopsy would show whether there is improvement or worsening.

Even when neuropathy progresses, it is rare that it will cause paralysis. It is far more common that it will cause weakened muscle action, not an absence of muscle action.

Customer: replied 1 month ago.
with weakned muscle i could still walk or lift arms.
Expert:  Dr. D. Love replied 1 month ago.

Usually yes.

Customer: replied 1 month ago.
my girlfriends husband was diagnosed with cancer. last november he was given six months. he traveled to germany and the treatment failed. he then went to ucla and the treatment failed. he then went to mexico for treatment. the tumor was reduced in size but he died because he went into a coma.. he passed in august. as he traveled the world i pondered that i would have just enjoyed the time left with my family.
by analogy i am now faced with a similar situation. i need to redirect my attention from this illness and focus on living. i need to stop worrying about what i have no control over. i agree. i need to accept the serenity prayer
Expert:  Dr. D. Love replied 1 month ago.

Yes.

Customer: replied 1 month ago.
why do people say early diagnosis can be treated. i am six months into this and there is no treatment for a cure. one of the stem cell companies said that stem cell regeneration is much better if done early. They also stated that nerves can regerate up to age 70. Are they selling me the Brooklyn Bridge?
Mom is ok. Her pain level is 10. Th pain is now in her butt. its like its moving down her body. I hope it moves out of her. she is very strong.
Customer: replied 1 month ago.
last night she said i am going to get better, she is very very positive. she is strong. the way i need to be. i wish there was something i coud do to take pain from her. id rather it be me than her
Expert:  Dr. D. Love replied 1 month ago.

I am not going to waste my time discussing claims by stem cell companies, for the reasons that we have already discussed. If they are not willing to provide you documentation from the medical literature, then there is no topic for discussion. If they can provide you with any documentation in the medical literature, then I would be glad to review it and discuss it with you.

Customer: replied 1 month ago.
what kind of documents in medical literatur. you mean like scrambler has medical backing.
Customer: replied 1 month ago.
they have literature regarding how pulling adipose stems and reinserting the cells go to injured nerves and help them to heal/regenerate
Expert:  Dr. D. Love replied 1 month ago.

Yes. I have already told you that there are articles in the medical literature regarding the use of the scrambler for other types of neuropathy, so there is at least a logical argument for its use in idiopathic small fiber neuropathy.

As I said above, if they can provide you with a reference to documentation in the medical literature, then I would be glad to review it and discuss it with you.

Customer: replied 1 month ago.
I think I will start the scranbler therapy Nov 7. By the fourth treatment I will know if it will work in elimnating the pain. The lady who had the pain n the mayo video had pain in her feet only. It was easy to place the electrodes on her legs close to the pain. My pain tends to travel so the Dr will have to determine where to place the electrodes.
Expert:  Dr. D. Love replied 1 month ago.

That sounds appropriate.

Customer: replied 1 month ago.
The reason I believe Scrambler will help is because if I dont feel the pain or it is minimized on a continuos basis I can then concentrate on healing. I will not be distracted by pain. Today at therapy I was 3 pounds smaller. I think its because of diagnosis and shock. But I cant afford not to eat. I have got to mke myself eat.
Expert:  Dr. D. Love replied 1 month ago.

Yes, for the reasons that we previously discussed.

Customer: replied 1 month ago.
I am trying to figure out how to save this info on stem cells so you can read it
Customer: replied 1 month ago.
In all this reading I read somewhere that people with autoimmune neuropathy are dead within three years of dagnosis.
Expert:  Dr. D. Love replied 1 month ago.

If it is in the medical literature, you only need to give me the reference to the journal.

Information about autoimmune neuropathy is not relevant since you have not been diagnosed with it.

Customer: replied 1 month ago.
Hope stem cell.com
Customer: replied 1 month ago.
This group hs a facility in Florida
Customer: replied 1 month ago.
I would have thought the Cleveland neuro would have mentined auimmune testing. My only concern with stem cell therapy is injecting anything into my body even if its my own cells. I dont want to accelerate nerve/muscle damage.
Customer: replied 1 month ago.
Do you have an email where I can send this iterate to you. I cant get it to upload
Customer: replied 1 month ago.
These are my options.
1. See if I can be switched to amitryline for weight gain and pain elimination and depression.
2. Try Scrambler to eliminate painThe stem cells are promisng but I dont get the impression they truly work. The Hope Stem Cell seems to be the only one that is saying cells will be regearted. But the facility in Florida hasnt sent me any medical info to substantiate.
I have an interview on Nov 1 with a doctor at NSIStemCells. I will ask him for medical literature
Customer: replied 1 month ago.
In retrospect I would have been better letting my drinking run its course rather than taking disulferim. I messed up.
It also appears that the xanax keeps me sleep every other day. It seems as if the sleep through night is more s because I get exhausted from being up the night prior. Like tonight. So sleep this evening will probably take me through the night
Customer: replied 1 month ago.
NSISTemCell trans other physicians on how to treat with adult stem cells.
So based on your knowledge do the adult cells do anything in the body
Customer: replied 1 month ago.
The problem with thw orrying is that it truly takes away from focusing on physical therapy and getting well.
Expert:  Dr. D. Love replied 1 month ago.

We have already discussed that stem cells for this problem is considered experimental.

Customer: replied 1 month ago.
Dr Love there is evidence that stem cell treatment to regenerate nerves is effective. Dr Richard Burt at Northwestern Unversity does stem cell transplants for CIDP all the time and patients have been without symptoms for years after the treatment. It appears that stem cells will work for neropathy but it simply hasnt been recognized by the FDA yet. It seems as if some of the comapnes are engaged in tehe treaements to gather sufficient evidence to support clinical trials. I dont know if stem cells will be approved within my life time but I think its the way of the world. There is evideence that the cells do assist damaged cells to regenerate.
Mediciene has an order of applying stem cell therapy. It is first given to chroonic diseases such as MS, CIDP, ALS etc. It is later open to other areas.
So I belive there is truth to the stem cell regeneration theory. I just dont know if sufcient evidnce on how it works has been established.
What I dont understand is how these comaonies are popping up and advertising cures. Or are they advertising cures as much as simply another methos for eliminating pain
Customer: replied 1 month ago.
The pain is under the ft and on the toes so they can place the electrodes on top of feet by the ankles. I have to pay attendtion to the pain in the legs so I can describe to Scrambler. Scrambler has ask that I record location of pai so they will know where to place electrodes.
Customer: replied 1 month ago.
If I can get rid of pain I can the focus on other things.
Expert:  Dr. D. Love replied 1 month ago.

This is the essence of why any treatment is considered experimental. Until there is accrual of sufficient evidence to prove that it is effective, it will be considered experimental.

Customer: replied 1 month ago.
When reading the stem cell literature, it seems to be geared at reducing apin. I will speak with doctor on Nov 1 and ask how it works. I have to decide by nov 1 as he SScrambler appt is Nov 7. It seems as of the Scrambler could possibl benefit my mom. If her pain is still present I may take her to Rhode Island for treatment also. At least they have a place to put the electrodes becasue her pain tends to be focused on one area
Customer: replied 1 month ago.
I think I would prefer Scrambler rather than drugs
Customer: replied 1 month ago.
I will wait on stem cells until after six month check up. I just want to get pain under control. I will take another biopsy at six months to see if my cells are regenerating. I spoke with a rep at Thera Path today. He said that they stratify their biopsies by age and gender. But Cleveland said they did not stratify their results.It i said that God knows in advance how we will end up. My motto this year was getting healthy. Everything was going fine until out of excitement aabout the Cuba trip in route hiome I drank the two glasses of wine. I had no idea it would change my life forever.
Expert:  Dr. D. Love replied 1 month ago.

OK

Customer: replied 1 month ago.
I am just relieved that there is a diagnosis. At least I know what i am dealing with. The thing that concerns me is that small fiber neuropathy does not list weakness as a symptom and my hands keep going weak
Expert:  Dr. D. Love replied 1 month ago.

We have already discussed this.

Customer: replied 1 month ago.
I didnt ask you a question. I merely stated ny concern.
Expert:  Dr. D. Love replied 1 month ago.

OK

Customer: replied 1 month ago.
A problem that I have with the stem cell compsnies is that not one will take test to measure your strength/growth before or after reatment. So how do they know what your true measure of success is. That in itself is a sign that the process isnt designed with a view towards results of the transplant. How can you know if its effective without measurable results
Expert:  Dr. D. Love replied 1 month ago.

You would have to ask them.

Customer: replied 1 month ago.
Please google HopeStemcell.com. They have a facility in Florida. Take a look at theit neuropathy protocal. Also Google NSIstemcell.com. Thisis the one that I think I will go with . They are connected with a company that has done stem cell work since 1999. The chines one has been in busines since 2003. The only thing is I only want my own stem cells placed in me. I asked for medical materials. They said that would be discussed with me during the consultation Tuesday and that refrences related to my case will be given to me at that time
Customer: replied 1 month ago.
The hands keep feeling weak like the arms did before the intense pain. The arms kept feeling weak. Then all of a sudden the intense pain came on. The hands keep feeling weak.
Expert:  Dr. D. Love replied 1 month ago.

No. I am not going to read their web site, as I told you.

Customer: replied 1 month ago.
This whole experience has truly humbled me. I looked at the employees working in ER. All happy. Just glad to be making a contribution to society. All of us contribute to the whole. This has been so humbling. I will have medical references after consultation with Dr Tuesday. The treatment is simply another way of treating the pain with a more lasting effect. It can last up to one year. That gives my body a chance to heal since the Cleveland neuro said it could possibly heal in two years. In the interim I can eat healthy exercise and maintan a stress free life towards healing. Who knows in two years society may be more advanced towards stem cell. But Dr Richard Burt at Northwestern Hospital in Chicago does a lot of stem cell transplants for certain diseases. So we are headed that way. It will be slow becaise of the impact on pharmiceutical companies
Customer: replied 1 month ago.
Dr Burt performed a transplant on a patient with CIDP and she was going strong after 3 years.
Customer: replied 1 month ago.
This will be my last effort to reduce the pain. If it doesnt work I will have to just liv with it
Expert:  Dr. D. Love replied 1 month ago.

OK

Customer: replied 1 month ago.
I prefer this than the scrambler. If this doesnt work i might try the Scrambler should the pain get worse.
Customer: replied 1 month ago.
Bu has a stem cell program on emphysema. So each university appears to specialize in some sort of stem cell research. Regenrative medicine is a new concept for us, but not in Eurpoe. It doesnt cure the disease but it hopes to send the pain into remission. .
Expert:  Dr. D. Love replied 1 month ago.

It would be fine to reference studies in the medical literature that were conducted in Europe (or anywhere in the world).

Customer: replied 1 month ago.
Google mayo cliniic regenerative medicine Class 101
Expert:  Dr. D. Love replied 1 month ago.

Then go to the Mayo Clinic to be part of their research.

Customer: replied 1 month ago.
did you read it
Customer: replied 1 month ago.
Google wikipedia stem cells. Chin is the leading country and allows stem cell transplants for more illnesses than any other country in the worl. The US has critized China for failure to document ts progress,
Expert:  Dr. D. Love replied 1 month ago.

As I have told you, I am not going to read anything that is not in the medical literature.

Expert:  Dr. D. Love replied 1 month ago.

There is no value in me reading this information. If it is based on studies in the medical literature, then I want to read the medical literature, not some simplified version of it that is intended for laypersons. Any information that is not based on the medical literature only confirms that it is still experimental, which is what I said before.

Customer: replied 1 month ago.
i simply wanted youto see thetrend ariund the world. hopefully i can get info to you soon.
Expert:  Dr. D. Love replied 1 month ago.

It does not matter. The history of medicine is replete with examples of early evidence that indicated a trend that turned out to not be true once sufficient data was collected. And when I say not true, not just that it did not help, but also examples in which it was harmful.

Customer: replied 1 month ago.
Dr Love
I dont think its a matter of the data not being true. Its a matter of time before it is an acceptable practice.. China has practice cell therapy for the past 20 years. The Chinese department of health has approved this therapy. Thus, China is leading the world.
This is no different than Russia being the first to do eye surgery. Russia performed this surgery years before it was done in the US.
There are cell transplants that are practiced in this country. Bone marrow transplants is a form of cell transplant and that has been practiced for years.
More important Dr Burts work in performing transplants for various diseases including MS, CIDP, etc is approved by insurance companies. Dr Burt is a well known scientist at Northwestern Hospital in Chcago. The government has approved those transplants. Googe Dr Richard Burt stem cell research
Customer: replied 1 month ago.
Also the FDA has aproved stem cell transplants for athletes using their own cells to recover from injuries more quickly as well as has approved transplants to get farm animals back to work more quickly.
Expert:  Dr. D. Love replied 1 month ago.

That is irrelevant. The issue is whether stem cell treatment has been shown to help this particular medical problem.

Customer: replied 1 month ago.
Thats what I will ask Doctor during my iterview Tuesday. I was told they would give me medical research at that time. Also this comany is operating under the FDA IRB procedure. So while the procedure itself has not been FDA approoved, the Clinic is operating under the gudielines of the FDA review Board.
On anoher note, the Cleveland Clinic approved use of the scrambler for pain treatment. I am waitng to see if she will approve the cell therapy. If she does, I will go with tha because there is a chnce that it will regerate my damaged cells.
Expert:  Dr. D. Love replied 1 month ago.

An IRB is only used for experimental treatment protocols, so if they are under an IRB, then you will be participating in a research protocol.

Customer: replied 1 month ago.
The coordinator said this is what hey are operating under. I will confirm with the doctor on Tuesdy during the call.
I just read that BU as a research project on cell transplant to restore thyroid function after thyroid cancer. I need to see if I can find a university engaged in research of cell transplant for neuropathy. I wonder of there is a list of stem cell projects for all universities
Expert:  Dr. D. Love replied 1 month ago.

No, but the largest single database is at clinicaltrials.gov