PTS & Trigeminal Neuralgia - What do my symptoms add up to?

Posted by macker4635 @macker4635, Mar 2, 2020

Hello All,

I have recently been diagnosed with Parsonage Turner Syndrome (PTS), but I also have Trigeminal Neuralgia (TN - diagnosed 2 years ago) and incontinence without physical cause (for around 3 years). Within the last couple of months I have also had vision changes (flashing white light, "blank" spots in vision), a kidney stone, severe vertigo and prickling sensations across my upper back. Right now, my doctor is treating me for PTS and TN only but I can't help but think this is all related. My research looking into all of my symptoms as a whole point towards MS, but I have had an MRI with no lesions. Has anyone else had a similar experience? Does anyone have any suggestions on resources available to someone with my symptoms?

Thanks,
Melissa

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MGMolly | @Erinmfs | Mar 2, 2020

have you had the lumbar puncture to rule out MS? I had one of those, no MS in me either. I read somewhere there are 90+ different autoimmune conditions. I have myasthenia gravis, graves disease (thyroid), roseacea (red face).

macker4635 | @macker4635 | Mar 2, 2020

I have not yet had the lumbar puncture, but it is a good suggestion to do so if my doctor will allow it. Perhaps it is true that once you have an autoimmune condition you are likely to have multiple. It sounds like it from the other posts I have read in this group. Thank you so much for your reply!

John, Volunteer Mentor | @johnbishop | Mar 2, 2020

Hi Melissa @macker4635, Welcome to Connect. It's good to see your doing your own research and advocating for your health. @Erinmfs is correct...there are more than 90+ autoimmune diseases. Here is a list from The American Autoimmune Related Diseases Association -- https://www.aarda.org/diseaselist/

There is another discussion for Multiple Sclerosis (MS) that you may want to join and post any questions you might have that are MS related.

> Groups > Brain & Nervous System > Multiple Sclerosis (MS) - please introduce yourself
-- https://connect.mayoclinic.org/discussion/multiple-sclerosis-ms-please-introduce-yourself/

Have you discussed your thoughts on possibly having MS with your doctor?

macker4635 | @macker4635 | Mar 2, 2020

In reply to @johnbishop "Hi Melissa @macker4635, Welcome to Connect. It's good to see your doing your own research and..." + (show)

Thank you for your reply! I have not yet talked to my doctor about this. I'm trying to do as much research as I can before I meet with him again later this month. I REALLY appreciate the suggestions and links!

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