MS, or paying the piper?

[MarkLavelle]

Just had my semi-annual visit with the MS neuro. He was the 2nd opinion for my dx, but he said my MS was atypical (which we had talked about before; symptomatically speaking, I've never had a relapse), and that my nerve damage might all be due to the chemo & radiation I had back in 1996 for lung cancer. My physiatrist subscribed to this hypothesis from the first sx.

Having had a couple of days to think about it, I'm totally confused about where I stand. If "MS" is just a description of sx, do the MS meds (Copaxone, in my case) make equal sense for all possible causes? I don't doubt that I have damaged myelin, but does the cause matter relative to the treatment?

[zilphia01]

from what I understand

Take this with a grain of salt, as I do not think ANYONE understands this disease.....

My understanding is that with MS, the myelin is being destroyed by antibodies that have mistakenly been taken for invaders that MUST BE DESTROYED..... and that would be the job of the immune system. The meds we are taking are to stop and/or destroy the immune system from making those white blood cells.

IF your symptoms are are a result of chemo and radiation, why would you need DMDs that are to stop the white cells.

Another question I would ask (for what it is worth) include - have you had MRI's, multiple mri's? Has there been an improvement in the lesions? My neuro said that is what he is looking for to see if meds are working. Not just relapse, etc but what is the status of the lesions comparing before and after...

I hope and pray you get answers (if there are any).

[KatW]

Hi MarkLevelle,

I've had paresthesia and neuropathy both from medication and from MS. I could not distinguish the two. As for your question, I think the cause would matter. If the cause is from your medication, I would not think the MS treatments (DMDs) would be beneficial.

What tests did you have to diagnose your MS?

[Lianne]

This is interesting to me. I have a friend who recently completed chemo and radiation for breast cancer and she has been having some symptoms that I associate with MS such as sensitivity to heat, which she never had before. I didn't realize that nerve damage was associated with chemo and radiation but it makes sense.

[Pipes123]

Mark, I've enjoyed and benefited from reading what you have written.

I think your question needs a specialist to answer, maybe a couple of them. You need to know about the mechanism of the ms drugs, and you need to know about the mechanism of the radiation/ chemo damage. And you need to know about your willingness to risk the possibility that you have ms after all.

Good luck sorting it out.

[SNOOPY]

Hi MarkLavelle,

If "MS" is just a description of sx, do the MS meds (Copaxone, in my case) make equal sense for all possible causes?

Multiple Sclerosis is a Neurological Disease which causes symptoms. The medications (DMTs) are very specific for the disease not the symptoms.

The DMTs were never designed to treat symptoms, although some have benefited with improved symptoms. And the DMTs have never been used, not even off label, to treat anything other than Multiple Sclerosis.

my nerve damage might all be due to the chemo & radiation I had back in 1996 for lung cancer.

Very sorry to hear this.

In 2004 my Aunt had a very rare, very aggressive type of Cancer. Her Cancer was rare enough Drs. really didn't know the best way to treat it. So, they threw everything at it.

The end result is she is Cancer free Unfortunately, her treatment caused other health problems. She has symptoms much like those we experience with MS, but she doesn't have MS.

My Aunt's Drs. have told her, her symptoms/health problems are due to the treatments to eradicate the Cancer.

[MarkLavelle]

Oops! I see I've been speaking in shorthand again!

I didn't mean that my nerves were damaged by the chemo & radiation directly. In that case, the sx would have started back in the 90's and would be exclusively peripheral.

And there's definite MRI evidence of demyelination in the CNS (brain & c-spine, if only a handful of lesions). My neuro & I agree that there's not much value in taking MRIs when there have been no brand new sx, so I don't actually know if they're changing.

So the theory is that the chemo & radiation somehow messed up my immune system, and that's why it "looks like" MS.

I'm not a gambler, so I'm perfectly happy to keep taking Copaxone as long as my insurance covers it so well ($20 copay/mo.). It's definitely the least harmful DMT available.

I suppose I'll never really know if taking C is a waste, though...