So, I just had an interesting development. As part of getting me ready to take Kesimpta, my doctor ordered blood work that included testing for Hepatitis B and an ANA screen. The hep test came back negative, but the ANA test came back as positive with a 1:160 Titer and speckled. I'm trying to research that result and I'm not sure, does it mean I'm more likely to have lupus than MS? Is anyone familiar with this test?
So, I had my follow up with my neurologist today. He said my spinal tap was normal, but he added that doesn't necessarily rule out MS (which I'd read here as well). What he told me specifically is that many doctors see symptoms of MS through the prism of other disorders, and that many patients spend years bouncing from doctor to doctor before finally being diagnosed.
That said, based on the MS hug I experienced, the white matter in my brain MRI and the lesions on my thoracic spine, he is confident in diagnosing MS. He was a bit surprised that it "skipped" my cervical spine, but that wasn't enough for him to rule out MS (especially since he did all the blood work and other tests for MS mimics).
I am actually VERY relieved, if that makes sense. The three months I dealt with the numbness and "squeezing" were horrible. Plus, a lot of doctors (in the past) wanted to see some of my issues through the lens of being overweight or older. As I was telling my neurologist today, I even went on B12 shots to try and combat the fatigue to no avail! Not to mention eliminating caffeine, processed foods, sugar, basically all junk from my diet AND quitting smoking. You'd think (if it were merely diet, etc.) I'd be feeling on cloud 9 with such a clean diet and nearly 30 lbs. lost, but I was still feeling (most days) like I wanted to just lie on the couch and take a nap! So, to have my neurologist not only understand me, but to want to help me is a great feeling.
For now, he is taking a measured approach. I'm already on an anti-convulsant for my epilepy (Vimpat), and he prescribe Lyrica at our last visit for nerve pain. He kept those at the same level and said we would revisit at our next meeting if we need to increase the dosage. He also prescribed Kesimpta to, as he put it, help slow the MS progession. With those meds and future tests, he said we would gauge progression going forward. I haven't researched Kesimpta yet, although, I do know there are hoops to jump through to get it both with insurance and the company!
Thanks again for all the great advice and insight. This is all new to me, so I am definitely going to read up on these posts!!
Your welcome, not sure if saying good luck is the right thing or not when it comes to dealing with a potential dx of MS, i think in your situation the dx might help you get the treatment you really need to get on top of the symptoms youve already been dealing with and as odd as this might sound, the knowing might help you be more understanding and kinder to your self.....seriously MS fatigue is the kind of fatigue where if the building was on fire you mightn't have the energy to try to save your self so yeah MS or not, spinal cord lesions defintely means you are not lazy!!
Let me know what happens and if you have any questions don't hesitate to ask.....JJ
fyi; dont have hot baths or hot tubs or hot showers because once upon a time they use to put people they suspected of having MS in a hot bath to diagnose because by rising core temp it would cause a psudo relapse (temporary return or worsening of MS symptoms) and heat will definitely exaserbate symptoms like fatigue until you've cooled down and rested enough..
Hi and welcome, sorry for not responding sooner to your questions.....unfortunately those results are not going to help much for lots of reasons but to give you an idea what to look for when it comes to LP results and specifically if its consistent with a neurological condition like MS or not, then you need to look for is everything that mentions "Oligoclonal bands"
You might need to keep in mind that if your neurologist who is an MS specialist, is saying both your brain and spinal MRI's are showing lesions consistent with MS, and you definitely have already experienced symptoms consistent with MS ie MS Hug, which by the way is literally caused by spinal cord lesions, wether or not your LP results show unique Obands or not might be your neurologist is looking for additional diagnostic MS evidence to diagnose you with confidence...
...but even if your LP dont show unique Obands and is absolutely normal, unfortunately normal LP results still wouldn't take MS off your potential diagnosis list because the LP is used for diagnosing many different types of conditions and not just MS, so if you have additioanl MS consistent LP evidence, it will help get you diagnosed and on to disease modifying drugs and symptom treatments with out having to wait in diagnostic limbo but not having additional diagnostic evidence is unlikely to change what your MS Neurologist already believes you more likely have had for some time.
Sorry i couldn't be more helpful......JJ