My Results From Mass General

[FeatherMe]

It's hard to believe but the THINK TANK at Mass General is still scratching its head about some of my test results as I am! I did not have an abnormal EMG or NCTs after four years of recorded such abnormal tests. I do have decreased sweating indicating the small fiber neuropathy. The tilt table test has them. It wasn't normal, but it wasn't what they expected. I didn't even last standing for a minute. They are also referring me to a movement disorder doctor. I have an appt. mid-Dec.

They will continue to meet, there are three of them, during the week and hopefully by the end of the week I will have some more info. It is so frustrating. I will learn, I will learn, I must learn to live day by day and enjoy that day to the fullest and forget about whatever else does not need my attention. I was so sure I would have answer this time, I just put my hope in the wrong place. Whatever is wrong with this body looks like it's going to stay that way or progress on so I better make friends and stop being frustrated. I had a happy productive day until I heard the news or lack of news. Okay, so now I have to work at keeping my head focused on what is important - for me it's "Seek ye first the Kingdom of God." Had I done it all along I wouldn't be in this emotional mess.
We rejoice in our sufferings. Suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us. God has poured out his love into our hearts by the Holy Spirit. Adapted Romans 5:3-4FeatherMe

[clinicalguru3]

Does this mean they have excluded the possibility of hereditary neuropathy??!!
How do they explain the discrepancy? Was it due to technical problems in the previous tests?
How is the rest of the investigation process going?

[FeatherMe]

I have no idea. I go Oct. 7th for a report. The only thing I've heard is that they can't figure out why my heart is not filling up. I plan on taping the session for I'm sure I'll not be able to remember everything. A nurse friend of mine is going with me. It's good to have another set of ears. I do have a set of questions I've already written down and will add yours that I don't have. Above all I need to maintain my cool! Listening with an empty head would be helpful. I need to be able to hear them all the way through before I react. Hopefully there will be time for questions and time for me to write down those that come up as I listen. Unfortunately the fellow with whom I met is rotating out so she won't be there. I will get back to you as soon as I can. Thanks for your support.

[FeatherMe]

I am exceedingly disappointed and I want to know to whom I can write about my appt. at Mass General.I thought it was to hear results of tests. I saw a fellow who put me through an exam, had to wait another fifteen minutes for her to talk to the doctor.They came in and told me less than what I had been told over the phone by the previous fellow. I would like to discuss this further in private with you if you would let me know how to go about doing that I would appreciate it. There is a lot more involved than mentioned here. Some one will be uncovered, someone will be disciplined.

Can temperature of the skin affect the outcome of EMGs and NCTs?