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New Doctor

In 2017 I went to 2 new doctors, Since moving to Florida I found it extremely hard to find someone to take care of me. I had 2 open heart surgeries and the last one they left Temporary Pacing wires in me which of course no one told me that they were in my chest. When I had MRI’s I had a burning there and I was told it was angina. Not the fact these wires were burning me with the heat from the MRI. When it was found out I have them I was told no more MIR’s so according to the Doctors I am now untreatable,

I went to a new Neurologist who decided I should be placed on Black Box drugs and just sit at home and watch TV but I should go 2 times a week for PT so I dont throw a clot. She said she can only go by my last MIR (taken in 2013) when I was on Aubagio and I ran out of the medication since moving here, That my MIR was stable. She said since I was 67 and it was stable I may not have MS anymore. And I don’t need medication but needed medication for pain which was the Black Box drugs, And at my age 67 MS stops and she refused to renew because that means I would need to have blood work and at my age she felt I was not worth the time But she will arrange for me to go into the hospital to get an IV drug Novantrone which is okay but can cause a brain virus and I could die in the hospital. Then she said I’m going to die anyway since I am 67 and people with MS don’t live past 70,

I never heard of such a thing and I asked her where she got that information, She said Look I am a professor of Neurology at the University of Florida and it’s in all the abstracts. I said show me one abstract it is in She said no, Then she said forgetting my son was sitting with me You are argumentive and refuse to follow what I want you to do, I think you have an emotional problem and may need to be “Baker Acted” since you disagree with me, My son stood up and said this examination is over and I am not going to allow you to abuse my Mother,

People if you have MS be very careful of the doctors you see, I turned this one into the Florida Medical Board. Hopefully they will do somehing about her

Hello Leah

It sounds like you saw a really terrible neurologist. And you were indeed fortunate to have your son with you as a witness.

Novantrone is called Mitoxantrone in the U.K. For a while people were treated with it (its essentially a chemotherapy drug) but it’s rare now for anyone to be given the drug for MS.

It sounds to me that you’ve been treated really badly throughout. To have an MRI with wire in your body is a terrible thing, and should be screened out. The MRI questionnaires in the U.K. probably would have picked up your pacing wires and you wouldn’t have had that MRI.

Just because you can’t have an MRI doesn’t mean you can’t get any more treatment for MS. Treatment options are limited if you are progressive rather than in a relapsing remitting phase of the disease though. But then Mitoxantrone would normally have only been given to someone with RRMS anyway, even when it was more commonly prescribed. So there may be drugs that are available to you apart from Novantrone.

It sounds like you need to see a different neurologist, preferably one who doesn’t expect you to die within the next few years. If death was inevitable from MS by the age of 70, there are a few members of this forum who will take issue with that as they are well past the age of being carried off in a coffin!!

Best of luck.

Sue

Hello, Leah
I am pretty much in agreement with Sue.
I had the onset of Transverse Myelitis at just short of 70, and this was changed to MS just short of 71. I have just turned 80.
I know of someone in Oregon with MS who has just turned 85.
I think your Professor of Neurology needs to go back to Graduate School.

Your post does raise a few points:

  • If you were not informed about pacer leads left in your body, that sounds like grounds for a malpractice suit.
  • If you were never asked about metal in your body prior to an MRI scan, that again sounds like grounds for a malpractice suit.
  • If your Professor was willing to prescribe on the basis of a 5 year old MRI, malpractice again?
  • Prescribing such an aggressive drug with a lack of full knowledge of the patient sounds like more malpractice.

Unless your Professor is actually Head of Neurology at UF Gainesville, then write to the Head of Neurology, asking fot his/her comments “ahead of an action for malpractice” and asking if they can suggest an alternative neurologist who is up to date on MS. If she is Head of Neurology, herself, then write to the Dean. This will rattle her cage, and put a mark on her record when she next comes up for tenure.

In any event, find a lawyer who handles malpractice/medical negligence on a “no win - no fee” basis and talk to them.
You might want to look up the Professor with “reviews” in the search term, and see if anyone else has complained about her.

Hope this helps

Geoff

And you were one of the people I referred to earlier as someone who hadn’t been carried off in a wooden box once past the age of 70 Geoff. Well said.

Sue

Up to date research:

"A Norwegian study in 2017 found that life expectancy in people with MS is increasing at the same rate as that seen in the general population. Overall, life expectancy was seven years less than people who didn’t have MS (74.7 years vs 81.8 years). The life expectancy for people with relapsing remitting MS was longer than for those with primary progressive MS (77.8 years vs 71.5 years).

The disease modifying drugs for relapsing MS began to appear in the mid 1990s, so many of the people in the study would not have had access to these treatments for part of their time with the condition. The researchers therefore suggested more studies over longer periods to see if the arrival of the drugs has affected lifespan."

These are averages I suppose, taking in to account the age at disease onset. The younger, you are, and the longer you have had the disease, the sooner you die.

If we say the average is by 27 years then 74.7 years sounds likely to be correct. So you have MS for 47.7 years.

Fay

Ref: https://www.mstrust.org.uk/a-z/life-expectancy

WOW… MS stops at 67… I’ll have a party next month… Everyone welcome… LOL, LOL, LOL…

Anne

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But I don’t want MS for 40+ years. And I don’t want to live with increasing disability for another 25ish years. (I don’t know if I fall in the RR or the PP group as I had RR and now SP). And as I’m now 50, and have had MS for 21 years, I want to be able to opt out of the last bit.

Please?

Sue

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In my case…

I take it to mean RRMS at disease onset going on to SPMS = (74.7 years to 77.8 years.)

A ballpark figure I suppose. Not too bad. I’m not fussed.

Longer than any of my grandparents lived.

Fay

Whatever your age, you don’t "stop " having MS, it progressive, incurable and a neurologist should know that!! Your son did the right thing and I would refuse to see that dr ever again!