Update on Neurology appt

I really liked the new doctor today (Neurologist), he really listened to me. Spent an hour just talking. Did a bunch of tests to check for sensory and reflex reaction. My reflexes are diminished. He does not think I have Erythromelalgia afterall.....hasn't totally ruled it out but suspects an autoimmune disorder (lupus, MS, RA, some other autoimmune inflammatory disorder) which is causing the widespread pain. Soooo anyhoo...sent me for bloodwork...4 pages of bloodwork....10 big vials. Results will trickle in over the next 2 weeks. I have to call tomorrow to set up an appt. for a head(brain) and upper spinal column MRI. Also, took me off Gabapentin and is trying me on Nortriptyline. Fingers crossed it helps since the Gabapentin has done nothing except make me miserable. Will keep you posted and of course keep checking in on everyone here cause I want us ALL to find the answers and feel better!! In the meantime I will continue to call whatever I have what-the-F-itis. Trying to keep my sense of humor thru all of this!

Hi kylesmom,

It's good to hear that your doc listened to you. He sounds like he is interested, for sure. I hope the nortriptyline helps. I like your 'what-the-f-itis' label. I think I'll use it. :)


Thanks for updating us Kylesmom.Its fantastic to hear that good docs are out there, we usually just focus on the bad less attentative ones. Other members report good results from Nortriptyline - heres hoping it helps you also. Love, love, love the what the f itis. Can LWE steal that from you lol!

You are one strong lady!

God bless


You can absolutely steal it! lol! So far the Nortriptyline gave me nightmares the 1st night (maybe cause I was coming off of the Gabapentin and starting that??), and it has given me bad stomach cramps about 30 minutes after taking...was in tears last night...and I'm only on 1 pill a day so far! But, I will see how the weekend goes and call my Dr. if the stomach pains continue, No relief yet but he did say it takes some time to get in the body and know if it going to help. You all know that drill!

Thanks Mads, I would say we all try to be as strong as we can....what other choice do we have right?!

Today I am trying to ignore the pain as it is my sons 16th bday and I am preparing for a party tomorrow. Keeping it much simpler than past years where I would go crazy making tons and tons of food. This year when the food runs out if people are hungry they can order a pizza! haha!



I am so glad you have found a doctor who truly listens! That can be very difficult to find for some. I am glad he doesn't think it is EM and I hope he is right. I wish you the best and that the new meds do the trick!

Happy birthday to your son. 16! That's a big one. Have fun and try not to push your self too hard with the party.

Take care,