PN introduction and question
 

Hello,

I am new to the boards and wanted to introduce myself and ask a question in the end if I may?

I was diagnosed and treated for lymphoma, an aggressive diffuse large B cell lymphoma that apparently transformed from a slow growing marginal zone B cell lymphoma three years ago. Approximately two years prior to that I started having peripheral neuropathy symptoms in my legs that was insidious and slow to progress. I did have battery of tests, nerve conduction, blood work, etc that confirmed I had axonal peripheral neuropathy at that time; however, it remains idiopathic still. They also confirmed I had a small monoclonal spike IgG lambda type. I did not then nor do I currently have diabetes, although my A1C has sometimes been in the high normal or just above normal range since treatment. The neurologist was responsible for referring me to hematologist/oncologist and my lymphoma was then diagnosed after a biopsy of an enlarged node. My oncologist did not think the lymphoma caused the neuropathy.

Since treatment I also was told that I have borderline glaucoma as my optic nerves where "thin" as the doctor put it but my pressures were normal. I am suppose to go for follow ups every 3 months... however, I cannot afford to at this time and I know very little about the eyes.

I initially took Neurontin when I was first diagnosed with neuropathy (300 mg if I remember correctly) and it helped then, it took the burning pain away but accentuated the numbness. Now I find that I cannot tolerate hardly any medicines after chemo, I seem to be supersensitive. I also found I could not take the neurontin and work, it was simply too sedative. I take no medications now except for a multivitamin and I seem to fair better overall at this time, except for the neuropathy.

I do suffer from severe fatigue, which did get somewhat better with the multivitamins. I also have concentration problems, particularly when I am tired so you will have to forgive me if I am forgetful at times.

Currently, the PN in my legs is about up to my knees and my coordination is worse, especially when I am tired. I believe it is starting in my hands now as I seem to be loosing fine dexterity with dropping things and get occasional shooting pains in my fingers.

The question I had for you all, if I may...

I have had occasional patches of pain that feels very much like an "indian burn" or a bad sunburn that is constant, day and night usually lasting 1-3 days. In the past, I only got it on my right arm. Now I have it in my left inner thigh region with no other accompanying symptom there.

Is this a common symptom of peripheral neuropathy? Also, can PN exacerbate fatigue?

I am in pursuit of researching more about vitamin B and D. It seems complicated but I hope the little bit by "Nature Made for her" I have been taking is helping.

Thank you for your time, c

Hi there, my name is Melody and I'd like to say Welcome!!

My husband also has idiopathic PN. Every month we go to the Neuropathy Support Group meeting in NYC. One of the people there developed neuropathy from chemotherapy.

Many things cause neuropathy. I myself have diabetic neuropathy. Got it a few years ago but within one week of being told I had it, I went on 5000 of Methyl B-12 and I presently have complete feeling in my feet and no burning. I only had it for a week when I went on the Methyl B-12. I put my husband on it but it did not help him. He's had it for almost 20 years.

Anyway, here is a link to the PN forum here at Neurotalks. We're a nice bunch of people and you can put your post over there and someone will come along and help you out.

I do wish you well.

Again, Welcome

http://neurotalk.psychcentral.com/fo...aysprune=&f=20

Great to meet you!!
 

Happy to see you have come to be with us. Just let us know if we can be of any help. There are great and caring friends here to assist you. Our shoulders are here for support in many ways. Seems you have been through some ruff times. Please keep us up to date. Seems that Melody has gotten you started.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene :hug:

Welcome to NeuroTalk:

Chemo can have a negative effect on normal cells in your body.

The mitochondria, which provide energy for your cells, may be damaged by chemo and this seems more likely in the nervous system.

Here is a link to an informational post about acetyl carnitine and its usefulness during and after chemo:

http://neurotalk.psychcentral.com/post653568-5.html

Also other drugs may cause PN symptoms too... there are quite a few of these. Here is a link to learn about that:

http://neurotalk.psychcentral.com/thread122889.html

Not only do I want to welcome you--
 

--and reiterate the suggestions made previously about coming over to discuss your situation at the Peripheral Neuropathy board, but I'd like to add a bit more info.

Chemo is certainly well known for causing neuropathy;, what is not as well known is that blood cancers can also cause it. There is evidence that the rogue antibodies that are associated with lymphoproliferation can cross react with certain nerve epitopes and damage nerves, leading to symptoms.

See:

http://neuromuscular.wustl.edu/antibody/mprotein.htm

http://neuromuscular.wustl.edu/nother/paraneo.htm

and.....
 

if your Ha1c was at and above the high normal, (and the high end has been dropped in the last few years) you should probably trim the carbs in your diet....

Thank you all for your replies, suggestions and welcomes!

I am so glad to have found this site and the wealth of information you all have provided here... I will try to navigate to the PN subforum correctly and begin the process of researching the links you have provided.

Again thank you very much!

hint--- to read the links I suggested...just click on them. They will take you there.