Julie, I’d like an update on you, do you CIDP?

Thank you for asking Lori – I just got out of the hospital where I was (finally) diagnosed with myasthenia gravis. I went into a respiratory crisis, my face froze, my throat spasmed and I couldn’t swallow, I was so weak I couldn’t stand and I had double vision off and on. At that point they diagnosed me with Guillan Barre instead of CIDP but after the first session of IVIG I was able to breathe better which would not have happened with CIDP or Guillan Barre, it would have taken longer. To make a long ten day journey short… after a few days of IVIG and some improvement in the paralysis and numbness I was still going downhill in other areas and/or not improving anymore. The two neurologists fascinated by my case came to the conclusion that I have more than one issue going on, they tried me on a mysathenia gravis drug called Mestinon and I showed immediate improvement in my muscle strength. So it seems I have some kind of demyelenation in my right leg but not necessarily related to the myasthenia gravis which attacks a different part of the nerve. I’m heading to Hopkins soon for a consulation with an expert to try to get the myasthenia under better control and to figure out if I also have CIDP. I ended up having a total of 9 sessions of IVIG and had only very mild reactions. Trust me – they took my vitals every hour and I got very familiar with the routine of my blood pressure and pulse going up and down. I will re-emphasize what everyone else has said about keeping hydrated though, the one day they did not run the saline drip in conjunction my kidneys started hurting so we ramped the fluids back up again. Other than that I had no reactions to the IVIG – yea! Just as well since I had other issues going on. I could not have been more surprised at the diagnosis – and at the suddenness of my hospitalization and severity of my weakness. A ventilator was never far the first few days until the IVIG and then Mestinon started working. I didn’t know how bad I felt until I finally felt better.

It’s good to be out of the hospital but I have no complaints about my visit – the staff of the Reston PCU were fantastic and while the food is what you would expect I wasn’t banned from my husband and friends bringing in fruit shakes and the like.

Thank you again for asking Lori, I will keep in touch on this forum as we still don’t know if I also have CIDP but I will say that after a week of Mestinon most of the numbness that has been persistant for more than a year is finally gone, so maybe that was the underlying problem all along – or maybe the myasthenia kept the nerve from healing properly. Who knows, right now I’m taking it one day at a time feeling grateful I’m alive and gaining more energy every day. 🙂

Wow, Julie, what a journey! Good to hear that you are at least responding to some of the treatments. My neurologist is also at Hopkins — I think that you will be impressed by their operation. Best wishes,