Waldenstrom and PN
 

Hello,

I found a post you submitted a while back (20th June 2011) where you described your sudden onset of PN and WM dx. I have a few questions re your post and I hope you don't mind me writing to you directly even though this post is about a cream for PN! Here goes:

I'm so sorry to hear that you've been dx with WM.

I had a sudden onset of PN in both feet in Oct 2010 and was diagnosed with cancer (Waldenstroms Macroglobulinemia) 6 weeks later. The IgM level at dx was 7,500 mg/dl (Dec 2010), but is now 230 mg/dl after 6 cycles of FCR (chemotherapy).

I have tested negative on EMG and NCV. Even so, my PN is severe. I can't wear shoes (only Crocks) and I can only be on my feet for an hour a day. I take Lyrica and Amitrypteline. The PN is actually getting worse even though the IgM level has fallen so nicely. They can't find anything else that makes the nerves unhappy so I can only hope that it will eventually get better now that the underlying cause (high IgM which destroys the myelin sheath) has been treated.

1) Did you have an IgM level of 8,000 mg/dl at the time of dx? Has that come down to 2,000 mg/dl?

2) How bad was your PN at the time of diagnosis?

3) I suppose you, like me, had chemotherapy first (?) and then Ritux maintenance (as I understand every 3 months). This is important to me: at what point in time did the PN get a bit better?? Was it during chemotherapy or much later?? I'm hoping your answer might give me some sort of hope - that's why it's important!

By the way, the life expectancy of WM is now 12 years - it was 5-7 years a few years ago. New treatments (e.g. using Rituximab in the chemo combo) has extended the life expectancy.

Sadly I can't give you my email adress as I've only written three posts.

Take care,
Grete

Hi Dr.Smith.
Thank you for your reply. I guess my concern is that I have been prescribed the paracetamol to stop the numbness. I am not taking it. I take 1-2 advils a day instead. That's about 400 mg of advil a day instead of 4 grams s of panadol a day. Since the advil is really an anti-inflammatory (panadol is not) I thought that if I really have inflamed nerves and this is the reason for the numbness... I have a better chance with the advil. It has gotten about 15- 20% better since it's onset. That's not very much but at least it's something. I have my doubts though that anything can really stop numbness. Numbness is not pain.

Numbness is ostensibly caused by damage to the nerves; they're not signalling anything (whereas pain is a signal sent by healthy nerves). Rather than stopping numbness, I think what needs to be done is stop whatever is damaging the nerves, and allow them to heal (if possible) or regrow.

I take a prescription anti-inflammatory, and I can't say that it helps my numbness one iota, though it does help the pain from inflammation. What I have noticed is that there are some things that aggravate/worsen the numbness, and that by doing the opposite of those things, the numbness lessens (and perhaps the nerves begin to heal/regrow). This takes a long time. I'm getting some results from the supplements I take (RLA, ALC, B5); they're not only controlling the pain (burning, stabbing, electric shocks), they also seem, over the long term, to be helping the numbness.

I can't say this will work for everyone (it depends on the cause of the PN, and I don't even know my cause yet!) but if we can figure out what's making us worse and halt/stop the progression, we can find ways to regenerate those nerves to some extent. I don't expect to ever be the way I was, but I'm old enough to compromise; there are a lot of things I'm learning to have to live with (though I don't do it quietly :eek:).

I learned some things that help by googling/reading all kinds of things related to neurogenesis. We must use common sense and caution because there's so much snake oil and hooey floating around out there, and no end to the charlatans eager to take our money. ;)

Doc

Dr. Smith:
Yep! I agree. And as you also mentioned, what works for one person's PN may make another person's worse. So even personal advice from sensible, experienced people should be checked against one's own symptoms and experience.

For example, Zorrro13 wrote:
I usually have a couple of glasses of wine in the evening, and it seems not to affect my symptoms. When I stop for a couple of weeks the numbness stays the same -- no decrease. Different response.

And Echos Long Ago wrote:
Again, that's opposite from what I experience.

What appears to be the worst for me is sitting for long periods. Even then -- like on a recent flight from Charlotte to San Francisco -- if I take care to be active before and after sitting I can keep the numbness at "normal" levels.

(I'm the nut in the airport doing toe raises while waiting for my flight... :p )

It seems like PN is like a set of somewhat related illnesses. It can be so different for different people.

It's... a lot of things; a symptom, a condition, a disease... (as many other things are).

Above all, it's a pain in the patoot and a cussed nuisance. :ranting:

Doc

RE: Help is on the way
 

Do not believe that anti-inflammatory drugs help. They help bone inflammation but not nerve. You need drugs such as Lyrica and Neurontin to restore feeling

Dr. Smith,

I have tried to reply twice over the weekend from my ipad. It just wasn't working. Thank you for your reply to me. I agrre one can't stop the numbness only try to stop the damage assuming we know what is causing it. That is why I didnt want to take all that Panadol. I did take a single dose Diflucan for a yeast infection one week before this sensory PN came on and I am wondering if Diflucan causes PN. In saying that last March I was involved in a car accident which gave me whiplash and caused a massive flare of PN all over my back, head,arms. This might also be from that. I give up. Just glad I am ok most days. Thanks once again.:)

May I ask how do Lyrica and Neurontin reverse numbness??
Thank you.

A known, rare (less than 1/10th of 1%) adverse/side effect is paresthesia, so I spoze it's possible, but permanent PN from a single dose seems unlikely, unless it was a trigger (catalyst) for some underlying situation.

Have you tried all the "MrsD-recommended" supplements? :)

Doc

Hi Dr. Smith, In regards to the supplements I am so unsure what to do. I am ordering the R-Lipoic acid today but it seems everytime I go to take something either my neuro or rheumo tell me not to murky the waters. I come here and read what seems to be good results with supplements etc. I have so many supplements in my closet at home. I had a doctor at the Sjogrens clinic at Hopkins tell me to throw them all in the trash, don't even take a daily vitamin. How do all of you handle it if your docs tell you not to take supplememts you think may provide some relief? I have a medical background but yet I am so confused with all of this. Good nurse bad patient!