No neurologist on board - will be asking for referral to one at Toronto Western, on the 16th. I will go threw my Rheumy, as she is at Toronto Western.
As your talking I can see my symptoms vary from yours. I have lots of gut problems, burning ankles (gout was mentioned), no uncontrolled vomiting, hair loss (use to have it long until - it started falling out in clumps). Have trace blood always in urine.
I use Seriphos to help me get to sleep. I wake often, or move around alot because of pain.
If only I had answers. I know I won't be getting much medicine help for pain, depression any other health issues.
Maybe my urologist was right it's MS.
Thanks for writing your symptoms - they help me understand about Porphyria - Glad your doctor finally gave you a diagnoses, you have been through a lot. There is lots of meds a person with Porphyria can take - just not me. My sulfite allergy will be problematic and my Rheumy is concerned.
Hugs
Gerri
