Last reply 1 year ago
I'm considered "suspect MS". Please help

Hey Everyone,
This is my first post, and I am a little concerned. I don’t know if I have MS or something else, and I was hoping someone could help.
About me: I just turned 30 last week, and returned to grad school this previous year as my daughter is prek now. She’s five and probably the thing I love most in the world. I’ve been married to my husband for the past seven years, and he’s been great through my being ill these past few months.
In October I got sacral shingles. I had a lesion swab to make sure it was shingles.I also had a blood test to make sure I didn’t have an old HSV-2 infection. Both tests concluded shingles were the cause of the spots. Doctors suggested stress as the reason for it- which made sense to me (my mom has had some chronic health problems culminating in brain surgery in October)
However, even after a round of anti-virals and steroids, I still felt ill.
December 23 I was outside on the trampoline with my daughter (jumping but no crazy tricks haha) and felt a strange feeling in my head. We came inside and I shrugged it off. I started preparing dinner and suddenly lost my vision. There was a dark spot and then colors swirling on the left side of both my eyes. I went to the ER and they diagnosed me with Scintillating Scotoma, and encouraged me to follow up with an ophthalmologist and Neurologist.
Neuro sent me for an MRI- found white matter lesions in my right frontal lobe,but due to my migraine headaches we chalked up the scotoma to a progression and the brain spots as well. The ophthalmologist found nothing of concern. MS wasn’t discussed really due to the location of the lesions.
I carried on with life, but began to experience strange symptoms. Incessant muscle twitching, numbness in legs, hands, back of the arm, and shooting pains and numbness in my face. It got so bad one night in class I couldn’t grasp my papers to put them into my binder. I have also fallen a few times due to leg numbness. The weakness in legs is especially strange. I’ve been a dancer my whole life so weakness in my legs is an odd sensation. Also troubling (totally TMI sorry) but even my lady area has been numb intermittently!
The scintillating scotoma has persisted, but subsides relatively quickly.
In Feb. this year I went to renew my persciption for contacts, and they found that I failed a field test, color test, and my pupils didn’t dialate appropriately. I have limited vision almost exactly in the areas I saw the swirling colors in the scotoma episodes.They also found optic nerve damage, and high pressure in my eyes.
My neurologist sent me for IV infusions of Methylprednisolone (sp?) and dx me with optic neuritis. The meds did improve my vision. He also ordered a lumbar puncture which I have completed. I am awaiting results- however the first phase of testing is clear- just waiting on O-band testing. One note of interest from that exam is that my opening pressure was a 6.
I’m still feeling awfully ill. Constant muscle twitching persists, scintillating scotoma, almost daily headache, new nosebleeds, and though I haven’t had numbness to the point of loss of function since the steroids–I still have pins and needles. I am also really tired- like more tired than ever.
Does this resemble anyone’s experience? Could it be something else?

Thanks so much!

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These symptoms definitely could be ms and assuming the dr thinks it could be as well based on the tests. My wife had the numbness and it cleared like yours. Still gets pins and needles and her feet and hands can fall alseep easily. She is more tired then before as well.

I think the o-bands could be another data point but I am not sure either way it will give you a conclusive answer. Did they also test things like vitamin d and b?

Great to hear you have a lot of family support. My wife was diagnosed in October of last year and it’s definitely an emotional time but have hope because there are many more options for ms then there were before.

I also have a son and daughter that are school aged and I have added ground flaxseed, vitamin d and lots of greens to their diet everyday. There is a genetic component (not huge probably though) to this and we wanted to do what we can to improve their future path as much as possible.

We follow a protocol called overcoming ms and it might be worth looking at their site as well. It has given us a lot of hope. While you still might not have ms being more familiar with it will help you mentally process through your options which there are many more today then before.

1 year ago

Very similar to me ATM what your going through I’m 99% diagnosed with ms, neuro is certain it’s that but can’t put it on paper yet as there is one last thing to rule out which they Say I don’t have and quite certain I don’t but te last box needs ticking. It’s been a slog but we’re getting there just need to be patient keep busy not too busy tho rest is important. I meself I’m 32 and have three beautiful baby’s and a lovely wife to be who keep me plodding on. As calidreaming said look at ms stuff so you know what to expect the people here are amazing too they have first hand experience with all things ms if you need anything just ask there Awsome. Sometimes it’s Easyer to talk to someone that understands exactly what your going through. Keep thee chin up lass no matter what your still here and get to see your little bambino grow up.

Google ms trust & ms society too they will even send you info in the post for nowt I have a box full iv still to get through he he

1 year ago

😂 just need to add it’s all similar ish apart from the trampoline I don’t have one of them or a vajayjay 👍

1 year ago

They definitely do sound like symptoms of MS, problem with MS though is that it’s so hard to officially diagnose because there’s quite a few conditions out there that have similar symptoms. I was officially diagnosed back in November in what first suspected to be a trapped nerve prior but after a few tests results I knew I had MS but still took them awhile to diagnose me. I hope it all works out for you but if, unfortunately you do get diagnosed with MS, it’ll be a long tough road but remember it isn’t something you need to go through on your own. This forum has been great for when I’ve wanted to get things off my chest and I’ve felt really depressed.

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