Update on my surgery decision

Kitt · 12-18-2009, 02:06 PM

Quote:

Originally Posted by JonAlex

Mrs. D, I was recently diagnosed with PN and I wanted to ask you about B6. I had been taking one multivitamin with 3 mg of B6, 2 calcium citrate supplements with 10 mg/tablet and one B50 supplement (periodically). Total B6 intake from supplements was 73 mg. My pyridoxine level was 47.4 ng/ml (ref range 5.0-30.0). I had significant peripheral neuropathy symptoms at that level. I stopped the B6 and most symptoms subsided within a couple of weeks. My current B6 level is 5.0 ng/ml and I am taking no supplements. I should add I still have an underlying mild neuropathy which my neurologist suspects is CMT. I don't have any neuropathic pain, just some spotty numbness in the feet. Everything I have read says I should be okay taking up to 100 mg of B6. Why am I different? I'd like to take some B6 just to get a little higher in the normal range. Do you recommend the P5P? By the way, I am a 60 year old male, otherwise in good health, very physically active.

Apparently you have not been diagnosed with CMT but it is suspected. There are many types of CMT as you may know. The CMT expert recommends only taking 25 mg of B-6 per day. If in fact you do have CMT, the dosage could vary but you seem to be back to what you were before after stopping B-6. You are more susceptible to this if you have CMT. Damage can become irreversible. You are different from other people as far as the dosage if in fact you do have CMT. You also get B-6 in your diet if you are eating healthy.

CMT is progressive no matter what you do. If you exercise too much (your body will tell you) you can exacerbate CMT symptoms. It perhaps would be in order to know for certain if in fact you do have CMT or something else going on.

JonAlex · 12-18-2009, 03:08 PM

Thanks Kitt. I have an appointment with my neurologist again in February. I plan on asking for the genetic test at that time through Athena. When I saw him last, it wasn't a consultation so I didn't have much time to get details. He just said he suspects I have a heridetary peripheral neuropathy. I don't know which test would be appropriate, I only know I have a demyelinating neuropathy. My first EMG/NCV with a different neurologist indicated I had an axonal and possibly demyelinating neuropathy. So it's not clear to me right now which test to take. If you have any ideas I would be glad to get your input. I am assuming my neurologist is familiar with CMT but I don't know for sure. He is the head of neurology at the hospital I go to and he has been practicing for about 40 years. Believe me I am anxious to find out. Any help you can give from your experiences would be appreciated.

Jon

atltom · 12-18-2009, 03:22 PM

Quote:

Originally Posted by JonAlex

Atltom--Your level of B6 was quite high. Maybe it takes longer to resolve. My toxicity was less than half of yours but I also had burning feet. It felt like I was walking on hot coals. My symptoms progressed within several weeks. I had loss of pin prick sensation, stocking and glove distribution, minor sensory loss (proprioception) in addition to the burning. I remember lying in bed one night about two weeks after stopping the B6 with the burning feet and when I woke up the next morning, the burning was gone and has never returned. That was about 8 months ago. I had my B6 tested about a month after stopping it and it was 12 ng/ml. My initial symptoms were in my arms and I still have some hand tremors after a year but they are getting better slowly. That also could be the Charcot-Marie Tooth neuropathy. Also, the numbness from the SFSN has taken a long time to resolve but hasn't been as troubling. Is there any reason you wouldn't want to test your B6 sooner than 6 months? I would think your levels would normalize sooner and that might be useful information to distinguish B6 from your spinal nerve symptoms.

JonAlex, Perhaps you are right, I should get my B6 checked sooner.

My burning feet, electrical jabs, stocking feeling all started in my left foot about 12 years ago. It progressed and got worse until suddenly, about 5 years ago, it was also in my right foot. And now it seems that I will have good and bad days with both, but not necessarily at the same time. I have had it progress to my calf area but never any higher. And other than an occassional tingling in my left hand fingers, it has never affected my hands.

In addition to my lumbar stenosis, which should be helped now with the surgery, I also have issues with my cervical. It is also loaded with arthritis but my neurosurgeon said I am better off treating it with nerve blocks, epidurals, etc. He said he would not operate because it would lead to my entire cervical being fused.

From what MrsD is saying, it sounds like the B6 may not be my problem and perhaps the compression was. I guess time will tell and another reason to get the B6 checked sooner. Thanks for your input.

Kitt · 12-18-2009, 04:51 PM

Quote:

Originally Posted by JonAlex

Thanks Kitt. I have an appointment with my neurologist again in February. I plan on asking for the genetic test at that time through Athena. When I saw him last, it wasn't a consultation so I didn't have much time to get details. He just said he suspects I have a heridetary peripheral neuropathy. I don't know which test would be appropriate, I only know I have a demyelinating neuropathy. My first EMG/NCV with a different neurologist indicated I had an axonal and possibly demyelinating neuropathy. So it's not clear to me right now which test to take. If you have any ideas I would be glad to get your input. I am assuming my neurologist is familiar with CMT but I don't know for sure. He is the head of neurology at the hospital I go to and he has been practicing for about 40 years. Believe me I am anxious to find out. Any help you can give from your experiences would be appreciated.

Jon

Hi Jon, It is very important that you see a neurologist who does know CMT. http://www.athenadiagnostics.com does have a program to help with the cost of DNA blood testing. It is expensive and very expensive if they have to test for the full panel. There are 22 + types that they can now test for and 50 types they have identified with no end in sight.

Do you have any family history of CMT or somebody with symptoms such as yours? If anyone in your family history has been diagnosed with CMT then that is the type you would have. Otherwise, I cannot guess as to what type you should test for. Perhaps your neurologist, if he knows CMT, could give you the answer. Even if you do not test positive for a type of CMT, that doesn't mean that you do not have it. It could be a type that they do not have a test for as of yet. CMT 1A is the most common type.

I was lucky, so to speak, as CMT is way back in my family history and I knew what I had before the neurologist said it. Remember too that symptoms of CMT vary greatly even within the same family. So symptoms that one has would not necessarily be what another has. Symptoms can become evident when you are young, old, or in-between. Or they might never be that evident. CMT is also misdiagnosed.

Remember that if indeed you do have CMT, there is no treatment/cure for it at this time. There is no magic bullet, pill, supplement or the like. You deal with the symptoms, try to eat healthy, exercise within reason, stay away from stress as much as possible - take care of yourself. CMT is progressive no matter what you do. I wish you well and I hope you can get to the bottom of it all.

JonAlex · 12-18-2009, 06:23 PM

Kitt--No one on my mother's side of the family has CMT. My father died when he was in his 20's and I don't know anything about that side of the family. I am pretty sure I'll be able to sort out which testing I need when I again see the doc. I know about the Athena program. I requested to have a rep contact me. Every bit of info helps.

Jon

Kitt · 12-18-2009, 07:26 PM

Thank you for your reply Jon. It is too bad that you do not know anything about your father's side. But, it will be good to find out exactly what is going on. Take care.

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