Sjogren's and small fiber neuropathy: Seeing a rheumatologist

Posted by penn @penn, Mar 7 2:45pm

WHEN I GOT OUT OF THE CAR TO GO INTO THE HOSPITAL FOR A PROCEDURE I COULD HARDLY WALK ALL OF A SUDDEN?? MY HUSBAND HAD TO HELP ME????? IT BECAME SO BAD THAT THE NURSES HAD TO HELP ME TO THE BATHROOM, HELPED ME SIT DOWN??? IT WAS VERY BAD! NURSES SUGGEST I NEED TO SEE MY RHEUMATOLOGIST AS SOON AS POSSIBLE, THEY SUGGESTED IT WAS THE SOJGREN'S SYNDROME. WILL SEE DR. IN A FEW DAYS FROM NOW! ANYONE EVER HAD THE SAMY SYMPTOMS??

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suetex | @suetex | Apr 15 6:47pm

In reply to @artemis1886 "My sensorymotor neuropathy was confirmed by an EMG/nct. (Nerve conduction test.) Dr Anne Oaklander is a..." + (show)

@artemis1886

My sensorymotor neuropathy was confirmed by an EMG/nct.
(Nerve conduction test.)
Dr Anne Oaklander is a research neurologist out of Boston. She practices in two other states. One of her lecturers are below on YouTube.

Just an fyi Small fiber neuropathy ( confirmed by biopsies in your leg).
https://www.medicalnewstoday.com/articles/small-fiber-neuropathy#:~:text=Small%20fiber%20neuropathy%20is%20a,and%20certain%20types%20of%20pain.
I was diagnosed with severe axonal sensorimotor peripheral polyneuropathy, SFN, dysautonomia and cardiac autonomic neuropathy. The cardiac autonomic neuropathy (CAN) bothers me the worst. My blood pressure going up and down along with my pulse rate going into bradycardia and tachycardia. When I go into bradycardia it triggers my seizures. So now I started having seizures in my sleep. The neurologist does not tell you neuropathy can cause seizures until they start happening to you and you have no idea what’s going on along with the paralysis. The doctors (cardiologist and electrophsiologist) tried me on medication for the arrhythmias but it did not work. Once the neuropathy moves into your heart you are given eight years to live. I have really bad dizziness and balance problems with the arrhythmias.
I have tested positive for Sjogrens, Lupus and connective tissue disease but never had the problems you are describing. Sjogrens causes dry eyes and dry mouth are the main symptoms.
https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216
Here is info on sensorimotor polyneuropathy
https://medlineplus.gov/ency/article/000750.htm
I do have problems lifting my legs to get into and out of the car. I can no longer drive. I have had four hip replacements and actebulum fracture with an ORIF along with a right hip replacement. My son or husband lifts up my legs and puts them in the car.. I sometimes have problems getting into and out of my bed. I have a sleep number bed that I can raise the head or legs. It hurts my body when I sleep in a bed with coils. I can feel the metal coils. On my bad days I use a wheelchair to get to the doctors office my son or husband pushes me. If I leave the wheelchair at home my son goes to the doctors office and borrows theirs. I have been told this is caused by the motor neuropathy and SFN.

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Thanks for posting so much info. This is a good example of the many faces of SFN. We are all snow flakes, it seems. If anyone can prove the staticians wrong, it's you!

artemis1886 | @artemis1886 | Apr 16 1:31am

In reply to @penn "What is SSA??" + (show)

They are markers in your blood for Sjogrens.

penn | @penn | Apr 16 8:17am

In reply to @penn "I never realized the damage to the body SOJGRENS SYNDROME!!!! and pain!!! Small Fiber Neuropathy burning..." + (show)

Sorry to say, so far nothing! helps!!! Warning, my Neurologist had me taking Nortriptyline, side effect!!!! Memory loss! I feel so different, It's terrible! I was told that will go away!!!! WHEN???? THE DRUG DID NOTHING FOR ME EITHER!!! SO UNHAPPY. PAIN!!!!! WHEN WILL THIS FEELING GO AWAY??????

penn | @penn | Apr 16 8:20am

HAS ANYONE EVER TAKEN, NORTRIPTYLINE? IF YES, DID YOU HAVE SOME MEMORY LOSS? FEEL DIFFERENT?

penn | @penn | Apr 16 9:52am

In reply to @artemis1886 "They are markers in your blood for Sjogrens." + (show)

I sure have it!! Oh the pain, can't sit in a car!

artemis1886 | @artemis1886 | Apr 16 11:17am

My pain is from the SFN.
Sjogrens mainly causes dry eyes and dry mouth.
https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216#:~:text=Sjogren's%20(SHOW%2Dgrins)%20syndrome,as%20rheumatoid%20arthritis%20and%20lupus.
Sjogrens is called the sister disease to lupus or RA.
I have lupus. Have you been tested for RA or lupus?

penn | @penn | Apr 16 8:36pm

YES, NG

penn | @penn | Apr 16 8:48pm

In reply to @penn "I never realized the damage to the body SOJGRENS SYNDROME!!!! and pain!!! Small Fiber Neuropathy burning..." + (show)

Dr. Gave me Prednaslone, horrible, doing nothing!!! Difficulty urinating and moving bowels??? Patients who have SMALL FIBER NEUROPATHY AND ARE FEELING BETTER WHAT MEDS WERE YOU GIVEN??