Connect
Movement disorder
Newbie here. I was diagnosed with neuropsychiatric lupus with oromandibular dystonia in January 2021. In 2016, the Neurologist I was seeing at the time said I had TIC, but the new Nuero said no.
Doc rheuma said while I do not show other signs of lupus, have positive antinuclear antibodies, positive double-stranded DNA,, positive SSA antibody. also have elevated antibodies that can be seen in lupus affecting the brain. Also have a neurologic disorder (Choreiform movements of tongue, cheek biting throughout the day, tongue biting, chews constantly on cotton/gum. Frequent blinking, frequent sniffing, ending sentences with “hmm”.)
Neurology noted possible choreiform movements of the tongue and toes, slight bradykinesia, lingual dysarthria.
Management of my symptoms has proved challenging for my neurologist as 7 medications and 4 Botox injections have failed to control them.
My lupus is well controlled by immunosuppressants as blood tests show normal now. The puzzle is why my symptoms are not improving. The new neurologist I am seeing does not have any other medications to give. She also said if it’s not the lupus it must be genetic s. She has suggested DBS.
I’m not giving up until I find out the underlying cause of my condition.
I’m from California, unemployed and have Medi-Cal.
I have sought a second opinion from Cleveland Clinic with no help.
I am hoping to get into Mayo but can’t afford it
Like
Helpful
HugInterested in more discussions like this? Go to the Brain & Nervous System Support Group.
Connect
@remybelle The Mayo Clinic Care Network may be an option for you.
https://www.mayoclinic.org/about-mayo-clinic/care-network/members/mapMayo Clinic has a long history of working together with other providers across the globe to solve complex medical challenges. The Mayo Clinic Care Network (MCCN) helps keep care local and in many cases, spares patients the expense and inconvenience of additional appointments and unnecessary travel. Mayo Clinic specialists work together with physicians, consulting and sharing resources to complement physician expertise –
Does anybody know the email address for the General Internal Medicine? The Executive Health Program from Florida gave me an address but it came back undeliverable.
Please note that the period before Mayo is @.
It's very hard for me to talk that's why I prefer to email
@remybelle The information and phone numbers for contacting all campuses for Mayo General Internal medicine is on this page. If speaking on the phone is difficult, perhaps someone could call for you to ask them about e -mail communications.
https://www.mayoclinic.org/departments-centers/general-internal-medicine/sections/overview/ovc-20461602@remybelle, please note that I have merged the various discussions you have started into one discussion. This helps members to see what questions have been asked and answered and keeps you connected to the people who are following your story.
To request and appointment at Mayo Clinic there is a central intake number or form for each Mayo location. See all the contact information on this webpage: http://mayocl.in/1mtmR63
Appointments are not made by contacting specific departments or providers.
-
Like -
Helpful -
Hug
1 Reaction