Steroid Drip Worsens Symptoms??

[SOONERMOM]

Hey Everyone, I have more questions concerning my friend that went numb from the waist down 10/08.  

She had gotten progressively worse and recently had a round of testing that showed no lesions on brain or full spine, a borderline VEP result in one eye and so far the LP has come back OK (probably still waiting on the O-banding part).  He did tell her that she had a lot of Virchow-Robin spaces and it would be considered abnormal.
Her Elisa was positive on her Lyme test, and the Western Blot showed 1 band....other than that every test was normal.

Her neuro (and mine) told her that he thinks that it is MS and is going to treat it as such.  She started on Solu-Medrol 1 Gram Daily x 5 days earlier this week.  She called me  last night because the numbness has gotten worse(more pronounced in feet) and spread up into her face.  She can now hardly walk at all, and is having tremors in her legs while just sitting down.  

Have ANY of you had this type of reaction to Solu-Medrol before.  I thought that if it was MS it would quash any symptoms, not make them worse???  I know it doesn't make you feel "good", but she is actually getting worse and fast.  Her neuro told her that he thinks this is caused by ANXIETY, and so gave her something for that.

Since I have a Lyme diagnosis, you know what my suspicions are here.  The doctors in our state won't even consider it and she was told that her positive Elisa was a "lab error".

I just don't know, I am so worried about her!!   It would be great to get just a little feedback about your experiences with steriod drips.  Her last one is tonight, but then she has tablets to taper off with afterward.  

Thanks everyone,

Stacey

[Amyloo]

Hi Stacey,  I have recently been dxed with Lyme, and will start my IV ceftriaxone in about a week.  Treatment for at least three months.  My internist (who dxed lyme) thinks I have been misdxed, but, of course, my MS neuro stated over and over "this isn't lyme, this isn't lyme".  He had no input for me or reason as to why I  have a CDC postive Lyme test, but "it isn't lyme, it isn't lyme".  Whatever.

I am still continuing my Copaxone, for a while at least.  I may have both going on, who knows.  I only know I have been getting sicker and sicker, and am really looking forward to the IV abx to (hopefully and prayerfully) see improvement.  

I guess what I want to say is, I would yank those steroids faster than fast, if they were possibly making me worse and there was ANY question about Lyme.  This is just me.

Love to you, Amy

[SOONERMOM]

I told her that I was really surprised when her spine MRI came back clean, considering her disabling symptoms.  It is just one neuro (we have the same one) that is saying MS, the first one she went to tried to tell her Guillain Barre.  I totally think he jumped the gun with the MS diagnosis.  I mean, I had 13 brain lesions and 1 o-band and they didn't even CONSIDER giving me steroids...of course I could still walk ok.

When you live in the middle of the country, it is very difficult to get a lyme diagnosis.  EVERY doctor here just repeats the same line about how there is no lyme disease in our state.  I did finally get her to send her blood off to IgeneX before the drips started and at least see a full testing for every band possible.  She has no memory of a tick bite and so I think she isn't convinced about lyme herself.

She has NEVER been on any medication for anxiety and of course I don't believe that this exacerbation is due to that.  It would be completely understandable for her to be anxious, but she was actually in a really good mood prior to the drips starting because she felt like someone was going to do SOMETHING for her besides give her a handicap sticker.

She did call him and tell him about her side effects with the drips, and that is when he told her it was anxiety causing the worsening of her symptoms.  It is just heartbreaking to talk to her because she is not herself and in such a bad place right now.  I want to just take all of this pain/numbness away from her and make her whole again.

Thanks for the MS doctor forum idea!  I will look into that.

Stacey

[wonko]

Just a thought, Stacey:  You could also post this under the new Ask a Doctor Multiple Sclerosis forum: http://www.medhelp.org/forums/show/322

I was never on IVSM.  Before my Lyme dx, I was on oral pred. to which I had a short-lived positive reaction (all sx went away for almost a week after I finished the taper).  I think I had a good reaction at first due to relief of systemic inflammation.  

The pred. did put me on an emotional rollercoaster, but I too share your concerns about the "anxiety" explanation offered to your friend.  

I hope your friend finds a safe, effective treatment for her symptoms...

[Heather3418]

If your friend shows positive for Lyme disease, why are the Neuro's insisting that she has MS?  I know it's possible to have both, a very slight chance.

With all of your friends symptoms, you would think that something would show positive on her MRI's.  Maybe this is another Neurological disorder all together.  I am just confused why two doctors are saying "MS."

Why do they think she had a false positive on her Lyme lab work?

Is her doctor aware that she is feeling worse while on her Solumedrol?  The stuff doesn't make you feel good, at least not for me, but it takes a few days to show any good effects if there are going to be any.  Alot of people claim they have increased energy and if they are like me, that's the only time my house is probably cleaner than the Queen's Palace in England.

I hope your friend is in close touch with her Neuro if she finds that the tranquilizers her gave her for "anxiety" are not helping.  I just don't think this is caused by anxiety, do you?

Heather