Been a while

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Re: Been a while

Postby greengirl35 » Wed Sep 12, 2018 5:20 am

Hi! So I’ve done the PT stuff the last two days and I can’t believe the difference! Could be coincidence but I really think it has helped. Yesterday was the first day I saw significant improvement, and today I feel like my vision is almost fully back to normal! I kind of played around with the angle a bit as well and could tell it was more of a stretch to angle my chin a bit more to my right shoulder when I would bring my head back to center, and last night when I did it I could feel it wasn’t pulling the same way, but still maintained the angle since I noticed such improvement. It never hurt, just felt tense the first night. Not sure if that makes sense the way I’m explaining it, but I could definitely tell when I was getting the affected muscles. Can’t thank you enough, I really think by tomorrow it will be even better, maybe I can drive myself to work tomorrow night :-D I also was able to find some information on the clinical notes from my first episode in 2011, I was able to create a login for the patient portal from that neuro office. His notes essentially said he had no reason to suspect stroke and thought demyelination was unlikely based on the MRI findings. And he thought possible testing for lupus would make sense. Also mentioned maybe Tolosa-hunt syndrome! Talk about rare! I would think that that would have been something that would show obvious inflammation on eye exam I had the other day. Interesting nonetheless. It seems from some reading I’ve done about INO, that fits with my experiences, but maybe these past two times it was just very slight and not obvious on eye exam. I’m going to try and not over speculate on what is causing it right now as I have LP this Friday. Just a wait and see.
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Re: Been a while

Postby jimmylegs » Wed Sep 12, 2018 6:20 am

yay that is amazing news! it makes PERFECT sense the way you are describing it. that is *exactly* what i had to do - play with the angles to feel the stretch. for me when i started to feel it less (like you, almost immediately), then i would try to make the 'hardness' of the gaze direction more extreme. like you end up looking in the stretch direction so far, and your head is turned so much, it's almost like rolling your eyes all the way to the inside of your own skull :S yikes lol
i am so glad it's working for you. i have some things to get done today but will spend some time absorbing those clinical notes this eve.
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Re: Been a while

Postby jimmylegs » Fri Sep 14, 2018 10:19 am

heya hope the lp thing went / is going well today :) my 2c: stay horizontal long as poss afterwards!
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Re: Been a while

Postby greengirl35 » Fri Sep 14, 2018 1:24 pm

Hi Jimmy! Yep, I’m horizontal for sure. It wasn’t bad at all, uncomfortable for a few minutes, now just laying around drinking lots of fluids. I really tried to keep calm in the days leading up to it so I wouldn’t get worked up. Glad I didn’t, wasn’t bad at all. Eyes are pretty much back to normal now which is amazing! Did you stop the PT once your vision was better, or did you keep it up for a few days? I wouldn’t get to it today anyway, but just curious. Thanks for checking in, and hope you have a great weekend :-D
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Re: Been a while

Postby jimmylegs » Fri Sep 14, 2018 2:42 pm

hey cool glad it was no big deal. in my case i was low on zinc when it was done but i didn't know that until long after the fact.
yes zinc is required for wound healing (including punctures). and if there's no reason for your zinc status to be low, then that's one less reason to worry about a post lp headache :)

re the PT i basically stopped once i had the all clear to drive from my neuro. maybe i should do more than just the odd rep or two though, when refreshing my memory to relay info to others ;)

i haven't been feeling like my vision was really amazing just lately, and while my nutrients *should* be topped up, i have been reading a little about lycopene.

early reactions:
1. good thing it's tomato season (eats half a tomato, makes veggies and pasta with homemade tomato sauce for dinner, slots grilled cheese w ketchup into the weekend agenda)
2. yay red peppers (polishes halo re bean salad - incl lots of red pep - currently in fridge as a side/snack)
3. eureka/no wonder things seem to be going downhill! (bemoans the sad loss of asparagus season)
4. red cabbage, huh (makes note to self re getting friend's mother-in-law's great borscht recipe)
5. carrots (sighs, plans more hummous and veggie sticks for the weekend)

in your case, for as long as the eyes are 'pretty much' back to normal, might be an idea to keep going with some more PT!
how are you with the longer ranges at this point? single centre line all the way down the middle of the road?
and you had said it was hard right gaze that doubled the worst i think. how is that doing at this stage?
i'm not sure i can really tell the difference between hard left and hard right vision any more, so i'm calling that a win :D
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Re: Been a while

Postby greengirl35 » Mon Sep 17, 2018 9:44 am

Sorry to hear your vision being hasn’t been great. A little of that PT and I’m sure you will be right back to where you need to be! My vision has been great, even at a distance everything seems to be single. Hard gaze to the right still leaves a bit to be desired so I’m going to jump back into the PT tonight. Over the weekend I definitely feel lucky I didn’t get the dreaded headache, just had some dizziness when I would stand too long, and my neck and back were sore. The actual puncture site didn’t hurt at all though, just generally was feeling stiff. I was horizontal maybe a little too long. Much better today though. I definitely feel your sadness on asparagus! Last time I was at grocery store there was only a couple bunches of sad skinny rubbery looking ones :sad: On to squash lol. Got some growing in the garden I can’t wait to roast up! Good to know about the red peppers! Definitely one of my favorite hummus dippers :-D
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Re: Been a while

Postby jimmylegs » Mon Sep 17, 2018 2:43 pm

that is so great to hear about your improvements :D are things good enough that you can drive yet? hope so.
yeah i can't do out of season asparagus - so nasty lol. luckily squash is AMAZING :D (and the seeds too :D )
good luck with this weekend's PT!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Been a while

Postby greengirl35 » Thu Sep 20, 2018 6:42 am

Hi, yes I have been able to drive, thankfully! Drives me nuts not being able to get myself where I need to be. You had an LP before right? I’ve been experiencing severe itching the last 3 days, no rash, and it’s not localized to any one part of the body. It will be quiet for hours and then it’s very intense at times. Probably just coincidence. Still no word from doctors office on results of LP, I’m assuming it can take a few weeks so trying to be patient lol. Maybe no news is good news :smile:
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Re: Been a while

Postby jimmylegs » Thu Sep 20, 2018 4:39 pm

awesome to have your independence back! way to go :)
i did have an LP. i got the headache something fierce but no itching. the last time i had itching issues it was something to do with folic acid. my body wasn't handling it properly, a standard supplemental intake sent serum levels sky high, and it gave me a 'phantom itch'. later when i had done a bunch of work on nutrition, i could take the same amount of folic acid with no drama. WHEW!
if memory serves, the turnaround time on every last bit of the LP results is annoying af. info will come though, no doubt! waiting still sucks :S
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ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Been a while

Postby greengirl35 » Fri Sep 21, 2018 8:55 am

Wow, super interesting about the folic acid. I haven’t taken that since I was preggo. Just got a call from neuro office. My follow up wasn’t until November and now he wants to see me this Monday. Hmm, trying not to over speculate, but thinking it ain’t great news. Never know though. Have a great weekend!
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Re: Been a while

Postby jimmylegs » Fri Sep 21, 2018 9:21 am

from the periphery, i feel like there is a recent emphasis on getting people onto treatments asap - even if dx is not as close as it can be 100%, in terms of the established and updated criteria.
i am a hold out haha - may be why my neuro is not breathing down my throat. she may suspect she is face to face with an uphill battle ;) either that or i missed my appointment and can expect an invoice in the mail :S

fwiw, hope you have a great weekend as well!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Been a while

Postby greengirl35 » Mon Sep 24, 2018 5:31 pm

So, went to neuro appointment today to follow up on LP, and he said it looked good. Zero o-bands, slightly elevated myelin basic protein. He actually does think I could be a mild or early case of MS based on my symptoms and the many things he feels we have ruled out. It’s like my symptoms are very indicative but my test results are not. He wants me to go see an MS Specialist for a second opinion, which I agree is a good plan. It’s frustrating having symptoms and not knowing why, but I in no way want to start on meds until there is a more confident diagnosis. Plus the negative LP is certainly questionable. Time will tell. Now that I’m continuing to feel better after this little episode I am going to get myself back on track with exercise. How’s the eyes Jimmylegs?
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Re: Been a while

Postby Scott1 » Tue Sep 25, 2018 3:22 am

Hi,
There is a demyelinating disorder of the CNS where the clinical expression can present as optic neuritis and acute myelitis called Neuromyelitis optica or NMO.
One of the differentiating features from classical MS is the lack of o-bands. There is a spectrum of symptoms in NMO disorders but there is a marker called NMO-IgG. It might be worthwhile asking if you are seropositive.
The major research on this was carried out by the Mayo clinic in 2004. At that time they concluded the standard MS drugs were ineffective because their mode of action are predominately T-cell related processes and NMO is B-cell dominated.
At present, it's under the umbrella of MS but the marker is unique to NMO.
You can have MS type symptoms but the treatment should be different if you are NMO-IgG seropositive.

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Re: Been a while

Postby jimmylegs » Tue Sep 25, 2018 5:41 pm

exercise and a careful diet and supplement regimen sure won't hurt! eyes are all good :D hope yours are too
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Been a while

Postby greengirl35 » Wed Sep 26, 2018 7:15 am

Hi Scott1, I have done some reading about NMO before and looked through my labs and never saw any specific testing for that. I have been told that my optic nerves looked good, and my VEP’s from a couple years ago were normal. It seems that my vision issues are pointing more towards 6th nerve or maybe slight INO (at least slight the last two episodes as eye exams couldn’t really tell me much). I’m hoping the MS Specialist will order spine MRI as a piece to the diagnostic puzzle to see what’s going on there. Maybe they will look at my brain MRI and be able to determine if they think it’s even necessary to look further. The negative LP is definitely making me question ms at this point so I’ll just be happy to have someone who only sees MS to put eyes on my results and evaluate symptoms. Really the only thing keeping it in question is the brain MRI and symptoms. Brain MRI’s don’t seem to change much and lesions are small, but I guess the location of them keeps it on the table and doc said slice selection for MRI can play a part too as you can’t see everything. Definitely not a cut and dry case I guess but it could go either way I suppose. Thanks for the info and response. And glad to hear the vision is right on Jimmylegs! Mine too! So glad I know about this PT now if this ever occurs again! Worked like a charm! Thanks again!
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