Hi to everyone that reads this forum. I was first Dx'd in 1993, had a second opinion. All the doctors agreed it was MS. I wasn't rx'd anything even though I was in my first episode. I went to the Dr who said get to the ER,
I did and after 5 weeks at home it resolved itself. I felt fine and went back
to work.
About 8 months later, bam, same thing again. Same 5 weeks but time
I had a battery of test's. My first MRI hate them, LP, all the fun stuff
In 1999 I began injecting avonex. I did that for 17 years until this past
Oct, 2010. I had a neuro appoitment, went and sat down with his nurse,
He came into the room and without asking anything announced to both
the nurse and myself that he doesn't think I have MS and that I should
stop using avonex. He said to me...You don't look like you have ms
and turned to his nurse, asked her, does he look as if he has it?
She said well, no not really. He then said that in all the years he's been treating me that I've never complained. That was the basis of his
new dx.
So I began tappering down my injections until I stopped totally,
It took about 2 weeks before I noticed a worsening of my SX
Today, my entire body from my chest down is numb and my left side
which WAS the better of the two sides started to equal the right side
and now today is much worse than the right side was when I was still on avonex.
I went to the neuro several times and told him what I've just told all of you and guess what he did?
He said, Oops, shrugged his shoulders and said go back on the medicine
Now, just one month back on avonex my sx's have become worse than they ever where.
I just hope that this is going to resolve itself b/c I hurt all the time 24/365
Sorry about the length of this post but I don't have anyone to tell anymore
I'm the sole surviving person of a family that once was.
Myself, my son and my nephew. That's all of us.
Sad state of my life,
A
Hi Andrew,
Welcome to MS HealthCentral. I'm so sorry to hear of your recent experience with your neurologist. Are you to the point where you might want a different neurologist? If so, call your local chapter of the NMSS (nmss.org) to ask for name of MS specialists in your area.
When he said that he didn't think that you had MS after all, what did he offer as a different diagnosis? Just becauase you didn't complain over the years?.......that's a bit infuriating.
Good news, it appears that Avonex must have been helping you for a very long time. If it doesn't seem to go back to the same effectiveness it once was, you might ask about switching to different MS medication. Maybe something similar but slightly different. I'm not a doctor, so I'm not sure what the best approach might be.
I understand your frustration. I think that anybody would feel the same in your situation. I only hope, as you do, that the symptoms begin to fade away again. Hey, did your doctor offer a round of steroids to try to calm these symptoms down quickly? That might be an option.
Lisa
Hi Lisa and thank you for taking the time to read and respond to my post.
Yes he did give me another diagnosis. He said that it was ADEM.
I
I am checking into finding a new doctor. The best ones are in Manhattan NYC
which is a 90 minute trip for me. Then cabs to his office it becomes a day
that makes sense.
When I was first dx'd in '93 I went to an MS Clinic in Manhattan. There was a
doctor there who was the "guru" of MS. He confirmed the dx as MS.
I spent last Tuesday in an mri for 4 hours. They put me out for that one.
I am severley claustrophobic not a good combination. Now, he wants me to
get, yet, another one it's scheduled for next week. They say that it's a short one only 15 minutes. What they don't realize is that 15 seconds in that tube is to long for me.
I just hope that what's effecting me now diminshes.
Andrew
Update on me for those who might care,
I never had the 3rd MRI I just couldn't force myself into that machine. But, I did have a nerve block injected into my spine with hopes that it may help the pain I'm experiencing. Well, I don't want to put a Poo Poo in it but I would HIGHLY recommend the procedure(took 15 minutes) for those tha suffer from a bad back
The injection to some degree seems to be helping with the new spaticity that I developed. If I where a 10 before(10 being the worst) I'd say the past few days I've been around a 6 t0 7. I would have been more than pleased with any number just no higher. A 30% recovery is great. Would I have liked more, well, yes of course I would have but since that's not the case I gladly accpet what it's doing.
On the other Dr. note, yes, I made an appointment with an MS specialist at a clinic who had excellent credentials. Neurologists are the busiest people i've ever had to pleasure to meet. Not one of them had any appointments closer than 2 months out. And that was a strech.
So, that's about if and even if no one other than myself reads this it's a good feeling doing a "finger vent" Now I just need to learn how to type not using the hunt and pray method. Effective but oh so slow :)