I am getting my rollator. Got my codes off the script.


724.4: Thoracic Lumbar radiculopathy and....

356.9 Idiopathic peripheral neuropathy

Big round of blood work coming up tomorrow including anti mag. Have to wait until 28th for my copies of my tests, emg, ncv, mri's. They are also running the melanoma screens as well as some very rare stuff like light chains, anti yo, gangliotides. too many to write down. This is gonna be another 100 cc blood loss, again, but will be the last of the blood work for a while (I hope).

Let's hope you don't have any of those terrible "long name" problems. (cancer etc)

If you remain idiopathic after all that, you can heave a sigh of relief, IMO.

Basically the cancer is ruled out. I've been worked up by my oncologist and lots of other tests point away from it. I am a 2 time cancer suvivor and have been vigilent in my follow up care. Oddly, cancer is not a frightening diagnosis for me. I faced cancer like a champ. With the neuro problems, my biggest fear initially was MND, specifically THE big one, but that is no longer a contender, tho' legally she says she cannot say 100% absolutely not. The very slightest of suggestion of that big one devastated me beyond my ability to cope. The neuro-muscular doc is running all tests that exist in the universe because...she can and it is a teaching hospital. I am very happy to have idiopathic, believe me.

I am hoping the insurance will cover me for the 2 dose trial of IVIG. I do not know how I will feel if it does not work. I do so want to stop the progression.

So you have had cancer twice? Did you have chemo?

Chemo causes PN..in many patients. There are supplements for this, to target the damaged mitochondria. At a late stage, they may be less effective, but I would try them at least.

I have a post about this in the PN subforum... the supplement thread.

I am taking the supplements you recommended, started 2 weeks ago. Trying to help those mitochondria along.

In 1996 I had a modified radical mastectomy and lymph node dissection on the left, stage 2, clean nodes. Chemo was Cytoxin, Methotrexate and 5 FU, I think it was 6 cycles. 2005 I had a right segmental mastectomy. Chemo: Adriamycin, cytoxin 6 cycles followed by 12 cycles of taxotere, 6 weeks of radiation for a new primary that was stage 1, clean nodes. I believe the Taxotere is what is at the bottom of this. I only found one clinical study involving long term survivors Txere and neuropathy. There was some contoversy among my docs about whether to do 12, as 7 or 8 cycles were what they were doing back then. 12 was considered "over kill". I see my oncologist on Aug 3rd to specifically discuss the long term effects. I am glad he did what he did, as I am still here with no cancer signs.

I am sure I do not need to tell you how sick I got on the taxotere, worse then the adriamycin. I had profound weakness, eye problems, barely walk, could not climb stairs, buzzed all the time (I still do). Took Cymbalta for a while. Chemo probably had something to do with the Grave's Disease as well.