Questions From A New Member

Greetings to all. I hope you had a wonderful Thanksgiving Holiday.

As you may read from my profile, I am here because I am a caregiver to my wife, and we are learning to live with this disease. So I will summarize how we got here, and mention some of the questions for which I seek answers.

My wife, 68 years young, began noticing what we now understand as symptoms about four years ago.

It began with minor tingling in her left foot, sciatica on her left side, and lower back pain after sitting for any prolonged time. After putting up with the problems for a while, with the usual remedial steps of over the counter medicines but obtaining no relief, we consulted with medical professionals.

Several MRI and CAT scan review by a very highly regarded orthopedist here in San Diego resulted in a diagnosis of slipped disks and pinched nerves in the L3, L4, and L5 disk areas. We decided she should undergo back surgery, resulting in the repair of the area, and fusion of L3, L4, and L5.

The immediate result was complete relief of the pain, and disappearance of the sciatica. Unfortunately, during recovery, she contracted MRSA infection, and was subjected to 45 days of two large infusions of Vancomiacin every day.

Then, while recovering from that mess, she fell and broke her right hip.

After having the hip pinned, she began a regimen of physical therapy, and normal physical exercise. She also started experiencing aggravating issues.

The foot tingling spread to both feet, and numbness began rising in her left leg. She began suffering sudden cramps in her calf muscles and her hands. Over the past 9 months this has progressed to intermittent bouts of significant foot pain that is nearly continuous, a feeling she describes as "walking on broken glass" and burning feet.

The cramps are sudden, last relatively long periods of time (15 - 20 seconds) in her calf, thighs, knees, and ankles, and are accompanied by excruciating pain. They happen at all times of day and night, and of course at night time they ;prevent her from sleeping. The pain lasts past the cramp, and is so troublesome she is unable to sleep.

The loss of sensation has affected her balance somewhat, so she has had to cureail many of her usual outdoor activities.

We've consulted with all the medical professionals who treated her. Further MRI and CAT scans show no evidence of further deterioration of her spine or nerve paths, other than the scoleosis we have always known about.

The doctors referred her to two neurologists who carried out EMG tests and determined that her nerve conduction is inded poor, showing significant latency in conduction to her hands and feet, but have not determined any other identifiable neurologic issue.

She is currently on a gabapentin regime that has lessened the pins and needles feeling. She was prescribed Lyrica but had no positive reaction. The only other prescribed medication associated with this problem are pain killers (Oxycodone and morphine) which she shies away from as much as possible.

Other medications she takes are coreg (blood pressure), and lotrel (cholesterol).

We are stumped on what to do next. Her quality of life is taking a severe downturn. None of the medical professionals we have consulted have offered much hope.

My extensive research on the internet so far has not shown any promising avenues for further inquiry.

We are fortunate to be able to travel just about anywhere there may be a source of genuine promise. We have been through the ubiquitous "laser spine instituted", and "back pain relief centers", all run by quacks and chiropractors offering remedies that sound too good to be true (we have not fallen for any, though now know that the promises always start with an initial expectation of $12,000 - $15,000 treatments, leading to the "golden age outflow of our gold!!).

So, I am open to suggestions.

Warm regards,

CharlieR

Hi Charlie,

Welcome to the group! I hope you find some answers or at least some guidance, here.

The first step, I would think, is finding a neurologist that understands CIDP, and is willing to treat it, aggressively. Gabapentin is the normal drug for the neuropathy, but there are so many more medications that can be used to help the underlying condition. Many here are on IVIG and prednisone. Both of those meds are common treatments for CIDP.

Should you not find a doctor, locally, I would suggest going to the GBS-CIDP website, as they have lists of doctors all over the country and may even have resources available in your area. When I signed up on their website, my advocate called me within 2 days.

I hope this helps you!

Welcome Charlie. I hope you both find answers soon. It does complicate things with previous spinal problems. Her symptoms are common to CIDP, but also many other causes. To diagnose CIDP a spinal tap is given which usually shows elevated proteins. Another indicator is loss of reflexes. The emg study usually shows slowed f waves. After everything more common is ruled out and the above indicators remain it is possible that the condition may be CIDP. A sleep study may help provide answers for the restless leg. Check vitamin d levels and magnesium levels as well. Also, have you ruled out diabetes? A university hospital is always the best place for complex issues as this. I wish you both luck. I hope this helps.

Thanks for both replies.

As to the question about diabetes. She has been diagnosed for what I believe are all the maladies that lead to these kind of symptoms. Diabetes was one of the first for which she was tested.

I appreciate the suggestions about looking for CIDP knowledgeable medical help. I am doing so. My foray into the UCSD medical system so far has failed to lead to any solutions in that regard, but I have other queries at the overall Unjiversity of California system, and am waiting for a response.

I will inquire in the GBS-CIDP website. Thanks for the hint.

Warm regards to all,

CharlieR

Hi Charlie,

I'm so glad you found our community. Welcome! I live in the San Bernardino mountains which is only a few hours from San Diego. I regularly see a neurologist in Redlands however in the discovery stage of my illness I was referred to an excellent doctor at USC Medical Center, Dr. Said Beydoun. He is a professor of neurology and the Director of the USC Neuromuscular Program. Here is a link to his profile

http://www.keckmedicine.org/doctor/said-r-beydoun/

I believe that finding the right doctor that specializes in neuromuscular diseases is very important and I was told that Dr. Beydoun is the best in our area.

Good luck in your search and keep us posted on how you and your wife are doing.

Blessings to you both,

Laurie

Possibly she has peripheral neuropathy brought on by the vancomyicinl

Insure you may already know about taking b12 benfantiomine

The drugs of choice for cramping and spasticity are Baclofen and Diazapram. No side effects if you work into them. Gabapentin is a weird product - no one quite knows how it works, and some people have major mental side effects. I cannot take it. 20 mg of prednisone, or 4 or 5 advil do more for pain for me. People with non obvious neurological issues are just cash cows for university hospitals and a great place for the students to learn how to not differentiate between the many hundreds of types of afflictions. On your nickel.

I walked into a hospital with Pneumonia and they filled me up with Levaquin, the most ungodly poison for profit antibiotic ever concocted. In 4 days my legs would not even move. When I woke up and got on my laptop, I found a huge FDA black box warning "never use on patient with any neurological diseases or suspected ones" they destroyed my life. After a year in rehab I can walk a bit with a walker and get around my car enough to shoeve the wheelchair in. My 8 year old is my saviour most every trip out. So NEVER take an floroquinoline based drugs [sic?] And never trust a doctor. I felt like a inmate at Auswitzch at the university hospitals. Spinal tap would be good, but mine came up clear and perfect, even with major inflammation at t6-8. So go figure! Its a damn crapshoot.I worked like a horse in housebuilding, cabinetmaking, heavy equipment operating [and all at once as I was the owner] and one day my legs dont do what I tell them - luck of the draw.Always took the steps under 8 floors, and did extreme hiking. I think stress got me, but thats a subject for a book.

Hi Charlie

In my experience there are really only a few ways to improve regular IViG infusions,predisone and plasma pherisis all have side effects however using a combo of these can bring up your quality of life. However not marathon running or travel outside the US. There is no cure it is forever my daughter is 18 and has had this for four years will maybe graduate on time if there are no more major setbacks. She has missed as many school days as she has gone.

Charlie, the drugs you mentioned I see neither of them related to cholesterol. Both seem to be blood pressure/heart related. My CIDP was allegedly cause by a cholesterol drug that was prescribed at 80 mg per day. I was taken off the drug immediately upon my first visit to a neurologists. Then I went on IVIG infusions and will forever. I adjusted my diet and incorporating red palm oil and coconut oil, etc., my lipids came into the normal range within 90 days. The infusions have taken my cane away, my pain away and balance is tolerable. My life is near normal now. I would like to refer you to information found in books by Dr. Fife on the benefits of coconut oil and red palm oil. Red palm oil in the diet will actually dissolve the cholesterol build up in arteries. I ingest a tablespoon a day in warm Bloody Mary mix. You can also see information from Dr. Fife at www.coconutresearchcenter.org. Good luck in getting it all figured out.

Skip



Skiptech said:

Charlie, the drugs you mentioned I see neither of them related to cholesterol. Both seem to be blood pressure/heart related. My CIDP was allegedly cause by a cholesterol drug that was prescribed at 80 mg per day. I was taken off the drug immediately upon my first visit to a neurologists. Then I went on IVIG infusions and will forever. I adjusted my diet and incorporating red palm oil and coconut oil, etc., my lipids came into the normal range within 90 days. The infusions have taken my cane away, my pain away and balance is tolerable. My life is near normal now. I would like to refer you to information found in books by Dr. Fife on the benefits of coconut oil and red palm oil. Red palm oil in the diet will actually dissolve the cholesterol build up in arteries. I ingest a tablespoon a day in warm Bloody Mary mix. You can also see information from Dr. Fife at www.coconutresearchcenter.org. Good luck in getting it all figured out.

Skip

Well, again thanks for the replies.

My reference to cholesterol lowering medication was in error. I should have said Lipitor, not Coreg. So no problem.

Thanks for the comment about Vancomyacin (sp?). Yes, I am questioning whether or not that may be a major influence in this mess. Unfortunately, the immediate impression is that the damage is done. So now we need to find a remedial action, and of course that is why I am on this search.

Thanks fore the recommendation about Dr. Beydoun. I will definitely look him up. Obviously he is close by, and I've come to know UCSD well.....!

I had not heard about those medications. That will be another area for me to research promptly.

Again, many thanks to all

CharlieR

Welcome Charlie. My guy has CIDP, diagnosed 11 months ago following a similar course of decline as your wife. He has found heat to be of great benefit with the deep pain and spasms. He has an electric blanket under him and on top when in bed and has heating pads that he uses when up. The most overall best help has been the Neurological Out Patient Program he attends 2 times a week and monthly IVIG.it is frightening how quickly he developed drop foot and contracture s after he became wheelchair bound. This group is an incredible resource, most of us have searched and discovered on our own and the info is current. Good luck and encourage your wife that in most cases there is some recovery , it just takes time. I hope this is of some help.

Charlie, first of all a warm welcome to our family. The biggest reason to stay connected with us is because most people have no idea what patients go through with this disease and it truely helps caregivers understand what a family member is going through and what you can expect with the disease and some ideas for treatment.
I have had CIDP for 5 years and finally went to the University of Michigans neurology department to finally get a correct diagnosis. These are the meds that help me. I’m on the fentenayl patch (which is the best because it delivery a constant flow of pain relief), Tramadol every 4 hours and then Morphine for brake thru pain. But the medicine that works the best for me and was recommended by my 3 best doctors was medical marijuana. I’m in a state where it is legal for medical patients. I use indica form of the med. this was very difficult at first because I was a police officer for 17 years. I tried some oils that you inhale through a small pen vaporizer. My pain which is almost always at a 10 when I woke up the next morning was at a 5. The next day, 2 days after using this vaporized oil I was pain free. For the 1st time in 5 years I was pain free. ** for the spasms and muscle cramps I was told by a neurologist to drink tonic water with quinine in it. That night I went from having over 100 Charlie horses to none! It taste nasty but one glass a day and no more cramps and spasms. I hope this helps.

Mark, what brand of quinine do you buy? Thanks for the tip.

Mark said:

Charlie, first of all a warm welcome to our family. The biggest reason to stay connected with us is because most people have no idea what patients go through with this disease and it truely helps caregivers understand what a family member is going through and what you can expect with the disease and some ideas for treatment.
I have had CIDP for 5 years and finally went to the University of Michigans neurology department to finally get a correct diagnosis. These are the meds that help me. I'm on the fentenayl patch (which is the best because it delivery a constant flow of pain relief), Tramadol every 4 hours and then Morphine for brake thru pain. But the medicine that works the best for me and was recommended by my 3 best doctors was medical marijuana. I'm in a state where it is legal for medical patients. I use indica form of the med. this was very difficult at first because I was a police officer for 17 years. I tried some oils that you inhale through a small pen vaporizer. My pain which is almost always at a 10 when I woke up the next morning was at a 5. The next day, 2 days after using this vaporized oil I was pain free. For the 1st time in 5 years I was pain free. ** for the spasms and muscle cramps I was told by a neurologist to drink tonic water with quinine in it. That night I went from having over 100 Charlie horses to none! It taste nasty but one glass a day and no more cramps and spasms. I hope this helps.

Hi. Other than being 2 years younger than your wife, the story, including the back surgery, sounds almost identical. Following back surgery about 4 years ago and pursuing ongoing symptoms, I was diagnosed with CIDP 3 years ago. I would suggest that in hindsight, the CIDP was camouflaged by the other back problems as I had previously broken a bone in my foot and had not really noticed it until the bruising became evident and thought that the tingling nerves was due to the back issues. Since the diagnosis I have been receiving differing amounts of IVIG treatment which has now settled to 2 days every 3 weeks and that finally (I have been on this treatment for about 12 months) appears to have slowed the progress of the CIDP although this regime has curbed our ability to enjoy our retirement to 3 week “bursts”. To this stage the pain etc. has been on the increase but so far tolerable although I am actually seeing the specialist next week to look at medication for the pain. As with other comments, the only thing that has any positive affect on the cramps for me is keeping the legs warm and ensuring that I maintain as much of an active life style as possible (I do take magnesium 2 times per day but don’t know if it helps all that much but also do not know the level of cramps I would experience would I not be taking it). As with other non-obvious medical conditions, CIDP can be a lonely journey with little understanding from “others” as we look o.k. and consequently should function o.k., e.g. the looks I get when I park the car in a disabled spot are interesting, I’m sure people think I fake the poor gait when I exit the vehicle. Consequently this support group is one place where we can acknowledge that CIDP is a very difficult journey, both for the person with this condition and their “support” person(s) as there is obviously so much that we do not know about the condition, its differing impact and effects and potential long term prognosis. Since I have received the services of a good specialist I can have some level of confidence that whatever this journey brings, I am able to access optimum medical assistance. Keep positive and take the opportunity to enjoy what you can when you can, blessings, bill

Hi Charlie - welcome to our very select group - you either need to get GBS/CIDP ( 1 in 100,00 ) or be a caregiver for someone who has been diagnosed.

I contracted GBS (also known as AIDP) in Feburary 2012 when I was 73 years old - had a deep chest infection. Spent 4 weeks shuttling between doctors before being correctly diagnosed, 1 week in ICU, 4 weeks in hospital rehab, 6 weeks home rehab (3/week), 6 weeks out-patient rehab (2/week), and 6 weeks self directed rehab (5 per week). I went from unable to walk or get out of bed unassisted, to wheelchair, to walker, to cane, and finally walking short distances without any assistance. I had 5 IVIG treatments in the hospital @ $8000 each - they got me up and walking around. I take Gabapentin every 6 hours and always know when I need to take another pill. My feet tingle and burn, I begin to wobble when I walk and my fingers tingle and do not function very well. When I take my pill, the symptoms disappear in about 30 minutes. If you can get your wife into some kind of physical therapy, I think that will help. It hurts and is frustrating but results come a little at a time. I remember putting little rings on verticle pegs, taking jacks out of play dough, learning how to get into and out of bed, and learning how to button my shirts. I can do almost everything I used to do - just not as fast. I am back to work and drive my car. I even went on a vaction to Matzalan in the Spring of 2013. CIDP can really turn your life upside down - If you let it -- My mantra, from the beginning was and still is - I have living to do and CIDP will not stop me - I will live with this chronic condition, but I will will not be deterred - I will survive and thrive. Just booked a vacation to Vegas in June 2014 and will also go on a quick tip in both Feburary and Sept. Welcome to the club -- bob

Charlie, welcome to our group. I hope we can help you find answers to the questions that you have. I have been undergoing IVIG infusions every 22 - 27 days for almost 5 years. Prior to my diagnosis, I had similar symptoms as your wife. One day I was on a ladder painting the crown molding in my living room and the next day I could barely walk or function. I collapsed while trying to walk into the ER of a major hospital. I was admitted and tests were run but, never a spinal tap. At the time I had 2 ruptured discs in my neck and knew that I needed to have them surgically repaired. The Drs. at the hospital came to the conclusion that maybe I was having a reaction to the muscle relaxant (Skelaxin) that I had been prescribed. I was then released from the hospital and proceeded to have my neck fused 2 weeks later. This was in March 2009. Two days after my surgery, I simply could not move, I went back to the hospital and had a MRI which showed a small bleed at the surgical site. The Dr. thought perhaps that was causing my extreme weakness. Still, no spinal tap was performed. I went to many Drs. and no one could help me. The general consensus was that I was just having a hard time recovering from my surgery. Luckily, I was put into pool therapy because my muscles had atrophied so much and my foot drop was so bad. The Physical Therapist knew me very well and had helped me prior to my neck surgery. She did the same PT on me as they do with paraplegics. Finally in mid-June of 2009 she went to my Orthopedic appointment and told the Dr. that she was positive that I had a neurological problem. The harder I would try in PT the worse I would get. He got me an appointment that day with a neurologist and I had a spinal tap and nerve conduction study at that time. I then was diagnosed with CIDP from GBS that I had when I went to the ER in March. Undergoing surgery 2 weeks after that sent my immune system spiraling out of control. By this time I was in a wheelchair. I started IVIG on July 3rd and have made slow and steady progress. No more wheelchair or walker, just a cane sometimes. I will be forever grateful to my PT for going with me that day. At that point I felt like I was truly, slowly dying. My husband has been my strongest advocate. I can't count the times he told members of the medical profession " My wife is not having a hard time getting over surgery, this isn't like her, something is wrong."

I would like to share a few things my Neurologist has told me; while muscle relaxants and diazepam type drugs may help the muscle spasms they actually make a person with CIDP weaker. Try heat packs instead. The same is true for pain pills. I am on Mirapex ( a Parkinson's drug) for the nerve pain and he is slowly increasing my dosage in hopes of relieving more of my pain. One final thing is Lipitor, I was recently prescribed it by my Internist and my Neurologist took me off of it and any similar drugs because one of major side effects of those types of drugs is muscle weakness and in people with CIDP it tends to be more pronounced. I still haven't figured out the sleep thing and it continues to be a problem. I purchased a Nook and I read a lot when I can't sleep. Those are great, because of the night setting I don't keep my hubby awake with a light on. I hope this information is helpful to you and your wife when you meet with your Neurologist. It took me two Neurologists to find the one I have now and he has been great.

God Bless you and your wife. CIDP is rare, it changes your life but there is still so much joy to be found. It helps having people who love you by your side and friends like those in this community that understand what you are and have been going through. Take care and keep us posted.

Cindy

Reply by Marfa 1 second ago Delete

Charlie, welcome to our group. I hope we can help you find answers to the questions that you have. I have been undergoing IVIG infusions every 22 - 27 days for almost 5 years. Prior to my diagnosis, I had similar symptoms as your wife. One day I was on a ladder painting the crown molding in my living room and the next day I could barely walk or function. I collapsed while trying to walk into the ER of a major hospital. I was admitted and tests were run but, never a spinal tap. At the time I had 2 ruptured discs in my neck and knew that I needed to have them surgically repaired. The Drs. at the hospital came to the conclusion that maybe I was having a reaction to the muscle relaxant (Skelaxin) that I had been prescribed. I was then released from the hospital and proceeded to have my neck fused 2 weeks later. This was in March 2009. Two days after my surgery, I simply could not move, I went back to the hospital and had a MRI which showed a small bleed at the surgical site. The Dr. thought perhaps that was causing my extreme weakness. Still, no spinal tap was performed. I went to many Drs. and no one could help me. The general consensus was that I was just having a hard time recovering from my surgery. Luckily, I was put into pool therapy because my muscles had atrophied so much and my foot drop was so bad. The Physical Therapist knew me very well and had helped me prior to my neck surgery. She did the same PT on me as they do with paraplegics. Finally in mid-June of 2009 she went to my Orthopedic appointment and told the Dr. that she was positive that I had a neurological problem. The harder I would try in PT the worse I would get. He got me an appointment that day with a neurologist and I had a spinal tap and nerve conduction study at that time. I then was diagnosed with CIDP from GBS that I had when I went to the ER in March. Undergoing surgery 2 weeks after that sent my immune system spiraling out of control. By this time I was in a wheelchair. I started IVIG on July 3rd and have made slow and steady progress. No more wheelchair or walker, just a cane sometimes. I will be forever grateful to my PT for going with me that day. At that point I felt like I was truly, slowly dying. My husband has been my strongest advocate. I can't count the times he told members of the medical profession " My wife is not having a hard time getting over surgery, this isn't like her, something is wrong."

I would like to share a few things my Neurologist has told me; while muscle relaxants and diazepam type drugs may help the muscle spasms they actually make a person with CIDP weaker. Try heat packs instead. The same is true for pain pills. I am on Mirapex ( a Parkinson's drug) for the nerve pain and he is slowly increasing my dosage in hopes of relieving more of my pain. One final thing is Lipitor, I was recently prescribed it by my Internist and my Neurologist took me off of it and any similar drugs because one of major side effects of those types of drugs is muscle weakness and in people with CIDP it tends to be more pronounced. I still haven't figured out the sleep thing and it continues to be a problem. I purchased a Nook and I read a lot when I can't sleep. Those are great, because of the night setting I don't keep my hubby awake with a light on. Medical marijuana isn't legal in Utah so I have never asked about it. I hope this information is helpful to you and your wife when you meet with your Neurologist. It took me two Neurologists to find the one I have now and he has been great.

God Bless you and your wife. CIDP is rare, it changes your life but there is still so much joy to be found. It helps having people who love you by your side and friends like those in this community that understand what you are and have been going through. Take care and keep us posted.

Cindy

I totally agree with you Bob. Take care-

Robert Eiferd said:

Hi Charlie - welcome to our very select group - you either need to get GBS/CIDP ( 1 in 100,00 ) or be a caregiver for someone who has been diagnosed.

I contracted GBS (also known as AIDP) in Feburary 2012 when I was 73 years old - had a deep chest infection. Spent 4 weeks shuttling between doctors before being correctly diagnosed, 1 week in ICU, 4 weeks in hospital rehab, 6 weeks home rehab (3/week), 6 weeks out-patient rehab (2/week), and 6 weeks self directed rehab (5 per week). I went from unable to walk or get out of bed unassisted, to wheelchair, to walker, to cane, and finally walking short distances without any assistance. I had 5 IVIG treatments in the hospital @ $8000 each - they got me up and walking around. I take Gabapentin every 6 hours and always know when I need to take another pill. My feet tingle and burn, I begin to wobble when I walk and my fingers tingle and do not function very well. When I take my pill, the symptoms disappear in about 30 minutes. If you can get your wife into some kind of physical therapy, I think that will help. It hurts and is frustrating but results come a little at a time. I remember putting little rings on verticle pegs, taking jacks out of play dough, learning how to get into and out of bed, and learning how to button my shirts. I can do almost everything I used to do - just not as fast. I am back to work and drive my car. I even went on a vaction to Matzalan in the Spring of 2013. CIDP can really turn your life upside down - If you let it -- My mantra, from the beginning was and still is - I have living to do and CIDP will not stop me - I will live with this chronic condition, but I will will not be deterred - I will survive and thrive. Just booked a vacation to Vegas in June 2014 and will also go on a quick tip in both Feburary and Sept. Welcome to the club -- bob