Sjogrens, SFN, unbalanced walking, nystagmus

@nurse49

Former ball room dancer caught my attention.

Have you had someone check your shoulder, neck, cervical tightness?

@nurse49 I’m a little concerned. You mentioned all the doctors that you’ve seen, but no mention of what they did to improve your situation. Did the ophthalmologist suggest ways to improve your double vision? I had to do vision PT that really helped my double vision. And did the neurologist recommend physical therapy to improve your gait? And how about a cane or walking stick? At the least, ask your PCP for referrals to a vision therapist and physical therapy. Also, ask your PCP if they have gotten reports from the other doctors you saw and if there are any recommendations. These small steps will help you get control of your situation and become your own advocate. Does any of this sound reasonable to you? Will you get back in touch and let me know how you’re doing?

@nurse49
Have you been tested for Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP)? It requires a spinal tap to test for specific proteins, etc. I read that it can cause double vision.

I also have SFN and many symptoms. I see a new neurologist at the end of April and will ask to rule out MS and CIDP.

Good luck getting answers and treatment for some relief of your symptoms and improved quality of life. I used to love to dance and be productive and active but I am reduced to 10%-20% of what I used to be able to do and dealing with major depression as a result. I am 54 and not sure what the future holds with such a low quality of life at this point.

I’m amazed with you story because we have some things in Common… I had problems going back to 2012 also. Had just gotten an ileostomy. Many GI issues for years but had started with Raynards before then and thinking about it Sjögren and scleroderma. I was also a ballroom dancer! Since before covid and during autoimmune diseases got much worse now having terrible time with legs, feet and all over actually. Brain fog and fatigue. I’m almost 79. Sorry you are having so much pain and problems with getting help. My issues are very complicated for Doctors due to GI issues. Very difficult to find answers or any solutions. Again so sorry for your pain. When you could move so gracefully before and now you have so many issues. I feel your pain. Try to stay positive.

So sorry about your situation too. It makes me mad and sad at the same time to feel like this. It’s not normal old age as one doc told me

I was a nurse and could not assist any doc in L&D with spinal dot epidurals… I pass out cold

Yes thank you for your response . three neuro opthamologists have given me prisms but they only work if you look straight. My issue is right gaze like as if you were checking your passenger mirror before changing lanes
I did therapy. No help there
The neurologists aren’t any better I am beyond frustrated

@nurse49. Have you gone to a university medical center or a large comprehensive medical center of excellence? You will usually find the doctors are more up-to-date and there is frequently research involved. When i first was diagnosed, the doctors didn’t know what the MRI was showing. My husband called the university hospital (about 1 hour away) and they said to come on down because they knew what it was. Thank heavens! It’s been a long road but I know I have good doctors. You could also try the Mayo Clinic Care Network.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members. They are centers of excellence that follow MC philosophy.
Is it possible for you to check into these resources?

Sending you hugs.

Thank you… my physicians I have seen are with the Stony Brook University, as well as Northwell Health. Both are top notch facilities here in NY. My PCP, did mention about sending me to a CENTER….
The problem here with dealing with the University Hospital, is that they have too many patients…