Hi, new here, sorry, but got to rant!

[dizzyintx]

Hello,
I'm new to this forum, though not to braintalk. I was dx with MS and diabetes over 17 years ago. I was taking a chemotherapy for MS when my toes and hands started hurting. The chemo also blew my heart causing me to have a emergency quadruple bypass at the age of 47. I remember waking up from the bypass thinking dang my feet hurt. My chest never once hurt just my toes and hands continued.

I don't really know if the pain is PN or not, but it's getting worse. My neuro says it's central, but she's never once ran a test to see. I have lots of lesions so it could be that, but PN makes sense also. I guess it doesn't really matter just controlling the pain. I haven't slept more than 2 hours a night, since Feb.

Besides the constant torture of my hands and feet, I have now got a new thing happening. It feels like every single nerve is exposed. I might be cold in my hands and sweating in other places on my body. It's like my body can't decide whether it's hot or cold to the extreme.

Since my meds are not controlling the pain, I go in in a few weeks for a baclofen/morphine pump trial. I also have spasticity. Has anyone tried this? I now take baclofen, zanaflex, lyrica, cymbalta, dialatin, and morphine for the pain. All on the max and some way over. Have tried ms contin, methadone, and fentyl patches. It just seems as if you could take a magic vitamin and this would settle down your nerves.

Not to ne too dramatic, but I can't take this anymore. The unrelenting pain is chipping away at me until I'm afraid there will be nothing left.

[Silverlady]

We do have some people here with PN due to chemo. Some of them will be here in a little while. Weekends are slow. Hang on.

Can you get a second opinion? Maybe another neuro? You said she didn't run any tests. You didn't have an EMG done?

Billye

[nide44]

EMG & Nerve Velocity Conduction studies as well as a
Skin Punch boiopsy test (done by a PN specialist neuro)
will probably give you results as to PN or not.

You are taking so many different meds - some of which have been
successful at helping with PN pain & symptoms- that it is really difficult to
tell what is going on.

Hang in and maybe 'Mrs D' or 'Glenntag' or David ('Wings')
will jump in here and try to give you some advice.

[dahlek]

I'm curious as a family member has MS and I'd thought tried it all...when there are flares it's worse than my daily grind w/the neuropathy and that's no walk in the park.

How docs test for MS and PN are partly similar and partly different. They both affect nerves, and often demeyelination but from all I've read that's the point where diagnosis changes and differs greatly. A good basic on what neuro docs test for is www.neuroexam.com For PN specifically web up a wise PN'er who put together a list of worksheets that track the variety of different exams, tests, blood tests etc. that go the whole route for diagnoses-IT'S A LONG LIST at www.lizajane.org and it'll give you a handle on all that goes on.

If you know what chemo med was used and if it's one used for cancer treatments, you mite want to look up support group boards such as Breast Cancer.org and take a gander using the search features for that med. You will probably find a lot of first hand experiences there.

I don't see a particular time line regarding the chemo, heart issues and the PN onset. It could be soo many if this's, then that's...

Many of the nerve conduction tests used to diagnose the PN's would either zero in on a PN issue or a spinal or brain based issue. Any neuro diagnosis process is just that, a process of elimination of those other potential conditions. Hope this helps you start to learn all about the things you need to know to get some relief!

And, feel free to rant away at any time! It's amazing how much better you feel once IT's out! - j

[dizzyintx]

Wow, thank you all for replying and for your kind words. I think I have had EMG's before. Is that the test where the dr sticks needles in you and you hear the nerve firing? I had it before my insurance would pay for botox treatments, it was about 3 years ago before my pain got so bad. My neuro is a top MS Specialist and people come from all over to see her. I bet she doesnt know squat about PN though ;)

That is a great idea to go to a cancer website and see if I can find anything out there. The chemo I was on when my pain started was novantrone. It quite literally gave me back my life and it along with cytoxan took it away. Novantrpne is primarily used for prostrate cancer. I took the lifetime max of that and one dose of cytoxan.

Does anyone know what the difference would be if I found out this was PN instead of being caused by the CNS? What I mean is there much treatment for PN besides controlling the pain? Sorry to sound clueless, but I just wondered. I have read through some of your post and haven't seen anything about treatments for the actual PN. If I'm wrong please tell me, I would love to know.

Again, thanks for listening :D

[nide44]

Treatment for PN is a pain control issue. PN has no cure-yet, it s a chronic condition that can be halted, will progress, and in a few cases has regressed.
Meds are the primary treatment. It differs so widely, there are over 70 different meds currently being used successfully- process of elimination as to what is correct for any individual.
TENS units, The Rejuvenator, the Rebuilder, are used by some. diet and exercise are recommended (see 'Senneff's ' books), supplements like
ALA, CoQ10, and others have been helpful.
Sorry to say, its a mixed bag of remedies that only help control symptoms-
no one 'magic bullet' recommended for everyone.
Others more knowledgeable than I, will probably have more to say on this.

[rose]

For some there is a magic bullet. For most there is not.

Whether a deficiency, toxin, or other cause, if the cause can be eliminated the peripheral nerves often repair partially or completely.

Yours is a complex case. Among other possibilities, the drugs are likely to be the cause of much if not all of the symptoms you write of. That puts you in a difficult position.

One of the ways drugs and other toxins cause problems is by interfering with the body's use of nutrients. I suggest that you go to the "vitamin deficiency" forum and read up on nutrients and the drugs and other things that can deplete them. You will almost surely benefit at least some by replacing certain nutrients.

rose