Multiple Sclerosis (MS) - please introduce yourself

I went for my follow up with cardiology this morning and by chance got a doctor who was filling in. He says my heart is fine other than the Pots and that it's insane of my PCP who is also in this medical group to withold MRI. He ordered a cervical, thoracic and lumbar this morning so now I am just waiting on prior authorization. I was so relieved I broke down in tears!

Symptoms are still there, some days better than others, but still no MS diagnosis.
Mayo diagnosed me with Fibro and Central Sensitization. Trying to keep on top of my exercises to build my muscle back up that I lost over the last year.
I downloaded the Emilyn app to track symptoms since 95% of my symptoms are the same as MS. It's a good app. You can set medications reminders too.

Recently had routine blood work, of course everything is pretty normal, except cholesterol because of my muscle loss and inability to exercise as much as I used to. Eating extremely healthy, fruits, vegetables, and lean proteins only. Cut out nightshade vegetables and noticed less flare ups. Rarely eat processed foods.

@legalese1972 - did you change your diet following your diagnosis? Was this something a doctor recommended or something you discovered yourself about fewer flare-ups with different eating patterns?

Doctor did not recommend. Just did a lot of research. I love nightshade vegetables, especially peppers. I've cut them completely out of my diet, increased my magnesium instake through topical lotions and my nerve pain and flare ups have decreased dramatically. Don't get me wrong, I still have symptoms daily, they're just not as bad and I'm not taking any opioids or benzos. Decreasing my intake of gabapentin, hoping to be off by the end of the year. I'm still struggling tremendously with fatigue. I hate taking medications, anything I can do without popping a pill that's going to screw up my brain, heart, or other organs, I'm all for.

I got into my old neurologist office. She says at this time that my MS panel is negative and they do not diagnose without having oligoclonal bands.
She did not seem concerned about the increased CSF protein since it was just 13 points above normal. I guess we just ignore the increase in brain lesions?

She wanted to rule out some things. I think lupus was one. And so far all of the blood work is negative.

I also have a cervical MRI, Evoked Potentials, and a VNG scheduled.

Doctor offered me gabapentin for my muscle fasciculations but I declined as I did not want to take something that was hard to stop taking.

All of my blood work is in and as I suspected, I do not have Lupus and my ANA is negative. My ferritin and Sed rate is all normal. Not sure what else is left to test for.

@bumble81 - thanks for the update on the testing you've been undergoing. Glad you are getting some answers, though it sounds as if you feel some symptoms you have had have not yet been accounted for in a diagnosis?

Your MRI, evoked potentials (I believe the same as described here https://newsnetwork.mayoclinic.org/discussion/contact-heat-evoked-potential-stimulation-cheps/), and a video nystagmography (VNG) are still to come, correct?

@legalese1972 - sounds like you've found nutrition can really make an impact on your symptoms. What does your doctor say about the fatigue that you've been experiencing?

It's just been frustrating is all. It has been 5 years since this neurologist found lesions on my brain and lots of different tests have been run. Now I have an addition lesion and I worry irreversible damage is being done.

Hi, @bumble81 ! Your post just came across thru my email, and it’s interesting. I, too, have lesions on my brain that they thought could be MS except I’m too old. I went to a neuroimmunologist at the university Med center. From an MRI they diagnosed a rare autoimmune disease called CLIPPERS. THe treatment is high dose steroids. I’m better now but not where I want to be. Have you seen a specialist beyond the neurologist? I have some journal articles that I will see if I can get onto this site. Keep advocating for yourself! Go wherever you need to go! Will you get back to us when you find something out?
BYW, CLIPPERS stands for chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids. I now get rituxan twice a year and I’m trying to taper off the prednisone. Hope you can find out soon