Very strange weakness

[GardeningMSer]

This one has some very good doctors baffled. Ideas are wanted.

A friend's sister-in-law has PPMS for at least 20 years. She is in her mid 50s and although weak was able to walk with a cane and care for herself. She is about 5'3", quite thin, not a complainer, and from meeting her once and knowing her sister a fine person.

Just before Thanksgiving 2012 she became very weak and was hospitalized, went through a lot of tests, and after getting stronger and lots of steroids went into rehab for about five weeks. Within a week or two of getting home she had another relapse and went back into the hospital and went through the same sequence.

Since November this has repeated itself time after time.

What is very strange is MRIs and all the other tests don't show anything that is causing this.

For a while one of her doctors thought this might be caused by epilepsy, but it has been ruled out.

Any ideas?

The woman I'm writing about is amazingly optimistic, but after seven months she and her caring, supportive husband are growing more and more concerned.

Thanks,

G
currently on Gilenya after almost five years on Tysabri and doing well.

[MSer102]

A friend's sister-in-law has PPMS for at least 20 years.

Just before Thanksgiving 2012 she became very weak and was hospitalized, went through a lot of tests, and after getting stronger and lots of steroids went into rehab for about five weeks. Within a week or two of getting home she had another relapse and went back into the hospital and went through the same sequence.

Since November this has repeated itself time after time.
Any ideas?

If this lady is having relapses then she doesn't have PPMS. Part of the definition of PPMS is that there aren't relapses and that MRI enhanced lesions stop after a short time. If her doctors are still thinking she has PPMS then no wonder they're confused! I just have to wonder how doctors can be "very good" if they're confused by this.

PPMS doesn't have relapses! If she's having relapses then she either has progressive relapsing MS or she has something else. "Very good" doctors aside, if this lady is having relapses and her doctors are "confused" by it then it sounds like maybe its time for her to get another opinion at a university or high level neurology clinic like Mayo, Hopkins, Cleveland or the equivalent.

[Katje]

I was in the hospital 7 weeks ago, had 2 MRI while there showing 3 enhancing lesions, yet they told me my MRI was clear and I was having a stroke. It wasn't until I went back to my regular neuro who ran an MRI of his own and saw the 3 lesions clearly!!


I don't know your sisters history, but she should find another doctor quickly.

[Thinkimjob]

Yes, she needs a new doctor, they can't just keep pumping the poor woman full of steroids, then sending her home, then starting again. 'Roids aren't good for people long term, otherwise we'd all be on them

Sounds like she's on a roundabout. Someone needs to stop it, and take another look at what is going on.