Hello,

I first posted this on the new members section and it was suggested I post it here. I tried to reply to all those who originally responded and didn't seem to do it right, so I wanted to thank everyone for the suggestions, links and welcomes here... it is very much appreciated.

I will begin the process of researching the information you all gave and the links.

Once again, thank you.

Below is the original post from the the new members section... I am sorry if I am not doing everything correctly as of yet. I hope to navigate better soon....

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 welcome to the boards though sorry about your health problems.

I am not an expert in knowledge like many here but will offer a few thoughts. Burning pain is common with neuropathy. Also I was told by my neuro when my condition spread that spreading can be common from one limb to another.
As for the glaucoma is there anyway you can go back for the appointment like maybe the doctor will work on a payment plan? I thought you can go blind from untreated glaucoma so that is my concern. I have a lot of eye problems that though is not one of them. It is very hard to find a doctor to connect the neuropathy and the eyes.

What type of bloodwork have you had? B 12,low D levels can impact fatigue and also cause pain etc. On this forum there is a supplement board that offers could info about vitamins etc.

Hope you feel better

We've been posting to each other on your other thread. So I won't duplicate that here.

But I believe the impaired glucose control alone is enough to create crushing fatigue. So is the Lymphoma.

My blood sugar has been borderline for many years, and the progression of fatigue issues has paralleled it. Since being metformin (Glumetza) I've been much better, and my legs stronger and sleeping much less. If your blood glucose cannot get into the cells, they will be weak.

I also take the acetyl carnitine (a low dose of 250mg a day) and 100mg of r-lipoic acid. 500mg Ester C with bioflavinoids, Krill oil, 5mg methyl B12, 10,000 IU of Vit D3. I used to take much more, but found these I use today the most useful.

Hello,

Thank you for your reply and welcome.

The bloodwork I typically get for followups are limited to CBC, GFR & LDH. They do not profile vitamins; however just before diagnosis my B12 was 244 pg/mL (normal 211-911).

From what I am reading about B12, I see this may be considered a bit on the low side and I am going to try and up my B12 dosage to 1000-2000 as I have read from this site for approx. two weeks and see if there is improvement.

Regarding the borderline glaucoma, I will simply have to wait for resources when available as with everything else. My resources are completely exhausted now. That is partly why I am here to glean more information about neuropathy and hopefully find supplements, etc.

That is interesting what your neuro said. I should have further defined these patches I am getting periodically. They seem to be more defined and slightly different than what is in my lower legs in that they are more burning without the pins and needle sensation. Initially I thought I was getting shingles, but I never get a rash and they come and go unlike the neuropathy in my lower legs. The one in my right arm recurs always in the same spot. The new one in my left leg is a first, so I do not know if it will recur in the same way.

It was just something relatively new and perplexing and I was not sure if it was a common feature of PN. One thing I am learning throughout this whole ordeal... if any new symptom comes and goes, I try not to worry about it too much... but if it stays, then I am a bit more concerned.... at least anything nonneuro related! :-)

Again, thank you for your insight!

244 is significantly very low. The ranges are very old and no longer acceptably valid.

Lowest norm in US is 400, and in Japan it is 500 (because Japan had a huge drug scandal that caused crippling/deadly events for 10's of thousands of their population in the 70's, so they are much more aggressive with B12 than here).

I would start on 5mg oral methylcobalamin daily on an empty stomach and retest in 3 months or so. This should bring you up considerably, and then you can see if it is working for you.

Hello...

I hope I am doing this right as I do not see my "replies" after submittal...

Wow, I was not aware that even a slight elevation in blood glucose could cause fatigue! I will try and cut carbohydrates as was advised by someone else on this board and review those supplements you mentioned.

Unless otherwise advised, perhaps a good plan of action is to first try1000-2000 B12 for two weeks see how that goes and proceed with the acetyl carnitine and so on. I want to make sure all goes well rather than using the deduction method to figure out what may not be agreeable.

Thank you for your reply MrsD!

Oh thank you for such precise instructions! I have written that down and will get them this week. I am going to ask the pharmacist to ensure I get the right thing. I am so encouraged, you have no idea! Thank you!

If I were you I would push for blood work testing vitamin issues and auto immune conditions. Also through this condition I have had a lot of changes in my symptoms etc. I hope you get the resources soon to get more care.

Most local stores do not carry this form yet. They will steer you to CYANOcobalamin instead.

iherb.com, swanson, vitacost, and Puritan's all have 5mg at very low prices.

example:
http://www.puritan.com/methyl-b12-67...2860?NewPage=1

I just trialed this brand when it first became available from Puritan's spring and it works very well.