Prednisone - to take or not to take?

[hc1]

Hi everyone.  

The last 7 months have been challenging for me.  I am a limbolander and you can read my last posts if you wish- but to sum up- I have some sort of flare up since a TDAP shot over the summer which led to having issues with tingling legs, to totally numb left foot, to extreme weakness and fatigue, and then problems swallowing due to soft palate weakness starting in October.   Recently, my neuro gave me a script for oral prednisone- starting with a week of 100mg a day and then a week taper to see if it would help.  If it does then he wants an LP because he thinks we are getting closer to an MS diagnosis.  

Anyhow, I had gotten a virus in the meantime and didn't want to take the prednisone to suppress my immune system at that time.   Slowly I have noticed my swallowing improving.  It is taking a long time, but I definitely notice some slight improvement.    

My question is, is it worth it to try the prednisone at this point?   Or should I just say I want an LP and get it over with?  Thoughts on this low dose of steroid even helping?  Should I expect side effects from a low dose as this?

Thanks as always!

[HVAC]

That is a long time with out a diagnosis. Yeah everyone has said it large amounts of steroids is the only way to go if you do steroids. It took a positive LP for me to get a diagnosis. I wish the diagnostic process was so arbitrary. I think what he is thinking is if it is MS the steroids would help but sometimes they don't.

Alex

[karryon55]

I think you are wise in questioning the steroids whilst having a virus because even 100mg can weaken your immune system. If I was in your shoes I would phone his rooms to ask for his or her opinion on what they think.

I do feel that this Neuro sounds a bit strange though suggesting that if the 100mg a day helps then he will do an LP for MS. It's a strange comment to make in many ways as have been suggested by others before me. Do you trust this Neuro or do you think it's time to jump ship?

I'm sorry I don't have any helpful advice to give.

Take Care,

Karry.

[lifesaheadache10scale]

Hi Hc1, very familiar with your symptoms. I hope you get some relief soon. Looks like you got some good responses. Please update when you can.

[hc1]

Thanks Ess and Kyle...

I will try to answer you questions.  

I do not know the MRI magnet.  I am 41 and have had some migraines in the past.    I haven't had a thorough exam in a while, but in the past it was normal- I may be due for a new one.  My neuro is THE MS specialist at a large university med center so I imagine he knows his stuff....??

My last MRI included the C but not T spine.  C spine was normal, to be repeated with the brain next weekend.

This all started about 12 years ago with tingling in the face and has progressed from there to include dizziness, loss of sensations, heat sensitivity, bouts of severe fatigue, depression, left arm and leg weakness.. and these new problems since July.  

Thanks again!

[kwarendorf]

I agree with ess on everything. About the steroids, go big or go home. If it is inflammation due to MS 100mg of oral prednisolone won't have much impact.

As to the MRI, have you been having studies of your c & t spines? If he is just looking at your brain I'd run for the hills.

Kyle

[essdipity]

If you have MS, your EMG would be normal, unless you also had some unrelated peripheral nervous system problem. Your EEG would be normal too. What about your neuro exam? Weakness, reflexes, eye tracking, etc?

If your MRIs show hyperintensities, that's not likely to be normal, unless you either are pretty old :-) or have high blood pressure, or possibly migraines, depending. There are other culprits too, rarely. Do you know what strength the MRI magnet is? 3T is best, and the MS protocol must be used.

One more 'if':  If you've been seeing the same neuro all this time, you have far more patience than I would! Does he claim to be an MS specialist? (Claims and reality in terms of knowledge are not the same thing.) Assuming you get the same non-answers as you've been getting, maybe it's time to find someone else.

ess

[hc1]

Thanks for the reply and your thoughts on the steroids.

I have been having yearly MRI's with neuro follow up for over 8 years.  My last MRI was in July, I have one scheduled for later this month to see if anything has changed.  

Lol, he does seem wimpy, but all of my other tests have been negative through the years- evoked potentials, eeg, emg, all blood tests.  My MRI has a couple unchanged "T2 hyperintensities".  

I think he just isn't sure what to do with me.  This flare up is the worst I've ever had though so we will see what he is going to do later this month...

[essdipity]

Well, if you've had this problem for months, I doubt that a brief course of prednisone would accomplish much. If the symptom is due to MS inflammation, the usual treatment would be 1000mg of IV methylprednisolone, administered daily for 3 or 5 days. And this is considerably stronger than plain prednisone. So in your shoes I wouldn't do it, especially if things are improving. But it's your call, and taking it is not likely to hurt anything.

I have to say, though, that your neuro seems wimpy. If he thinks you might have MS, why not just give you the IV stuff? That would have a much better chance of doing the trick, though even that wouldn't necessarily work, as it doesn't always. This way it seems he's just dithering.

I hope he's not expecting an LP to be diagnostic. If so, red flag! What have your other test results been? Have you had a very thorough office exam? And I hope you've had an MRI, as that would come way before LP in any case.

ess