Hello! I have been suffering with facial pain and cluster headaches for the last 8 years. I have been to 5 or 6 different neurologists. I have also been diagnosed with MS then later determined it to be atypical trigemenal neuralgia with cluster headaches. Most recently my neurologist is confused and thinking its an autoimmune disorder but labs show it not to be. I am flustered and just don’t know what to do from here. Suggestions?
Maybe make a journey to a expert…further from home…travel if ya can?
am searching FOUR YEARS also with
Name the auto immune disease!
With little helps from labs and drs…
Sojurns…nope but 3 symptoms
Lupus…nope, but 2 of those symptoms
THERE ARE 20 disease ruled out
Time to rule in!! I hate the unknown…shortens my sleep!
I am now starting with a teaching hospital…driving 4 hours to st louis
Starting friday
Immunologist / rheumatologist
In the last 4 years
Got TN… Now in remission
Teeny stroke
So many antibiotics
So many times with neck glands needing pain pills and steroids
Inflammation markers
IGA syndrome
The last two symptoms in 6 months
Chronic fatigue,
Plus
Neuropathy in my toes… Sad
If i can get some knowledge…i can find whats best for me!
Do what you can to try and research, ask, learn, repeat!
Cant only rely on doctors… Keep posting!