[Alkymst]

Vicki and I took a trip to the neuro last Friday - first time I've ridden the train w/out being in tears most of the way from the cold pain so that was a plus. Dropped ~8# in 3months so that was a plus but when you are shedding from a 'pottamus physique it takes a while to make a dent. Neuro was pleased but still perplexed a bit and asked me if I did anything special to lose the weight -stopped eating M&M's peanuts - but now he's still not sure but then he's never seen me and M&M's peanuts either. B12 was up from ~400 in January to 700+ now - well below many people's values I know but positive for me nonetheless - the reading is accurate since I stopped the MeB12 (2mg)/day 5 days before the blood work.

Reviewed meds and was happy that I'm finally off Lyrica - did nothing for me (same is true for neurontin, tegretol, fentanyl patches, vicodin, and phentoin) but trying to back off Lyrica was a bit testy - took me almost 4 weeks as I made up my own schedule but it worked out fine. New "old meds" now are tramadol and nortrypt (started 3 mos ago) but a statin may be added too. The neuro and my cardio both know the side affects relative to PN, as do I but w/ my cardiac history this is a clear risk vs benefit call for me even though we eat a lot of cold water fish and include fish oil in our diet. Niacin is out - tried years ago w/ really bad results.

Now if I can just get the bioequivalence for fingers of gentleman Jack Daniels = to mg of tramadol worked out I'll be set - that was the only thing that occassionally touched the cold pain but my previously faithful "court of last resort" may soon succumb to the fickleness of PN; where I used to have constant unrelenting cold toes and feet this has been replaced by burning and cold simultaneously - this is new for me - seems that the small fibers are somewhat screwed up. Didn't think that the tendon and muscle shortening could be more unpleasant but this "temperature" combo is quite impressive to me - long days w/ non-existent nights - back to the bioequivalence study.

Still, all in all, small, but positive news.
alkymst

[MelodyL]

Alkymst:

I have a question about pain meds. How come things like fentanyl patches, and vicodin do not work for some people? I mean, arent' they opiates?? Don't opiates work on everyone?? This is very confusing for me.

Years and years ago, when they first put Alan on the fentanyl patch, it was like pennies from heaven. He actually looked at me and said "oh m god, the pain is gone". Of course, over a period of time, he went up to 125 of the patch, but by then he found Dr. Theirl who used his G5 machine on Alan and Alan titrated down to 25 but could not get off himself and tried to go to detox. He went for 24 hours, then the detox place told him that since they could not detect any drugs in his system, they were booting him out. He told them he came in with the patch, they saw the patch, but this was to no avail. (Turns out there is a special test for fentanyl and they don't give that at the hospital rehab place he went to). Now how stupid are these people?

He had to come home and stay in bed for 5 days just to detox himself from the 25 of the patch. Horrible flu like symtoms. But he did it.

Oh, Alkymst, I'm going to Cornell on July 6th.
Tell me again, the name of that trial med that I'm going to ask about.

Thanks,
Melody

[Silverlady]

Alkymst,
The cold and burning pain you are experiencing simultaneously are nothing new to me. I've suffered from this for several years now. And I've found nothing I can tolerate (dryness) that touches this pain. It seems to go along with the territory, Small Fiber Sensory Neuropathy (SFSN).

Glad to hear of your weight loss but your B12 is deplorably low to have been supplementing with that much daily.

Melody,
Most opiod meds don't do much for nerve pains. It takes a combination for most people to get relief. The last few weeks as I've suffered from the sacral breaks, I've found that the Loritab they gave me for the bone pain, combined with the Lyrica for the neuropathy, really makes no difference in the level of the burning pain from the SFSN. It seems to stay.

Billye

[Alkymst]

Melody,
the drug in clinical trials is ranirestat an ARI (aldose reductase inhibitor). I believe it's in PhaseIII now - originally developed at Dainippon Pharma if memory serves me correctly. I think Flsun01 originally posted about it but the Jack Daniels=tramadol bioequivalence study could be fogging my memory.
Do post what you hear - maybe something good.
alkymst

[Alkymst]

Billye,
I'm sorry to hear that you've experienced for years what I've just begun to deal with - seems like SFSN is bad from every possible angle. Don't know what to say about the deplorable state of my B12 - I was just pleased it went up.
hope you do find something that you can tolerate and will give you some relief from the cold/hot pain.
alkymst

[MelodyL]

Alkymst:

I've printed out the information that you posted.

Just put it in my wallet. I'm going to Cornell on July 6th.

Will update on ( ranirestat an ARI (aldose reductase inhibitor). when I come back from that appointment.

I'm very interested on what they will tell me.

Melody

[rose]

I think I have addressed this elsewhere, but it is very likely that Alkymst's B12 level was much lower than the 400 result. False results are very common, and your increase has probably been much more than 400 to 700+ suggests.

It also is almost 100% likelihood that malabsorption is severe. And in addition to that, transportation of B12 is likely not very efficient.

The bottom line is that if it were me, I would take more each day. I believe it is very likely that more B12 and more time will get that level up higher.

It is also possible that your body is functioning more efficiently (including thyroid, which often is affected when the body is damaged by something else). That or other good effects may be partly or entirely due to improvement in function.

rose

[nancy-h]

Alkymst

I am so very sorry that your PN has progressed to the Hot/Cold feeling stage. Your small fibers are indeed confused to say the least. That is what I was told when I tried Horizontal Therapy this Spring. The HT was supposed to help the nerve fibers relearn their correct response. It did help a little but what is really strange is that is seems like my entire peripheral nervous system has been effected. I feel calmer all over.

I can also relate to the night pain. I have to take a sleeping pill (Lunesta) or I cannot rest at all. And the feeling that your muscles and tendons are shortening is absolutely terrible. I think the burning pain is worse but all these symptoms go crazy at night. I think I could work through the daytime pain if only the nights would give me some rest and relief.

Best of luck,
Nancy-H

[Alkymst]

for your coments and suggestions. I pm'd some additional info that might be helpful but I'll certainly follow up on your suggestions. Fortunately, my thyroid functions, TSH, free T3, free T4, and total T4 are normal and have been for >10yrs - my endo keeps close tabs on me for Hashi's and an isthmusectomy.

I've learned a lot from reading your site and expect to learn a lot more.
alkymst

[Alkymst]

Nancy-h and I'm really sorry that you also suffer the same type of pain. Could you tell me more about the Horizontal Therapy - I'm not familiar with it but will certainly try if it can help at all.

You're right about too about the nights being the worst - didn't use to be true for me but no longer - the days and nights just blend together - reminds me of a very old "Haggar the Horrible" cartoon where in the 1st panel Haggar is sitting at the left end of an enormous table laden w/ food as Helga served him breakfast. The next panels were much the same and in the last Helga asked why he was still eating. His response was that his momentum from breakfast carried him over into lunch and then dinner - the PN seems to be similar the days and nights are a continuum.

Thanks for your comments and I hope you continue to get relief with your Horizontal Therapy.

alkymst