Can this be SPMS

[Jenaw35]

Long story
Dx probable Ms in 1995
Exacerbation in 1999
Started copaxone
Exacerbation in 2004
Symptoms we're mostly legs, electricity feeling, fatigue and problem with word recall. Both times. Pretty much lasted 2 months first time in 99. Maybe a month in 2004. Resolved almost 100 percent.
Went off copaxone in 2014. Just because I really wasn't having any symptoms or exacerbation. Dr agreed go off. If something changes can always go back on it.

So fast forward to Sept of 2017. Had episode of syncope and high BP. Had cardiac work up no problems.
Nov 29 2017. Driving my car all of a sudden felt like I was going to pass out. Since then I have blurred vision, lightheaded brain fog, feels like my right ear is blocked, moments of extreme anxiety and things that don't move are shaking or shimmering. Plus have a weird flight or fright response to sudden noise or movement.

Was referred to ENT for vertigo.
Dx. Vertigo and Sensory neural hearing loss in right ear.
I thought maybe it's BPPV .
Had ENG. Abnormal caloric test.
Ordering MRI.
Thinks maybe something in my brain.

Here's my question
It's probably a dumb one.
I really believed that the Dr made a mistake with Ms dx. I have not had anything for 14 years and the 2 I had we're minor.
Could I have SPMS? Or could this be a new exacerbation? The symptoms or totally different from the others.
I never even thought it could be from Ms. Util he said brain MRI and possible referral to neurologist.

Sorry I know this is long

[KoKo]

Here's my question
It's probably a dumb one.
I really believed that the Dr made a mistake with Ms dx. I have not had anything for 14 years and the 2 I had we're minor.
Could I have SPMS? Or could this be a new exacerbation? The symptoms or totally different from the others.
I never even thought it could be from Ms. Util he said brain MRI and possible referral to neurologist.

Hi Jenaw35 ~ welcome to MSWorld

Your question is not a dumb one - but it is difficult for us to answer.

It's possible you could have SPMS, or you could have a new exacerbation. Or the symptoms could be from some other condition.

A neuro exam and MRI scan would give a better picture of what's going on, or rule out some conditions, and hopefully answer your questions.

Sorry that I couldn't be more helpful. Maybe other members have some ideas, or similar experiences to share.

Good luck, and let us know what you find out.

Take Care

[Thinkimjob]

I really don’t know.
What I do know is that MS is not terribly predictable. Symptoms are all over the place. All mine were sensory - numb fingers, toes, etc - until 💥, one morning I woke up and couldn’t walk.
Neuros are reluctant to call SPMS these days. Probably because the already tested drugs *might* work. Good luck and best wishes.

[pennstater]

I lost my sense of smell at 17, I wasn't sick, and no cause has ever been found. They now think MS. Nothing until 29, when I had vertigo and weird episode of confusion. No real cause ever found. They now think MS. Diagnosed at 42, with only thing between 29 and 42 was a few months of joint paint at 36 and little numbness in right hand, which thought was carpal tunnel.

I only laid out the above to illustrate how variable MS can be.
I have been on meds since 42, and had that discussion with neuro. Do I risk going off at 54 or is the med keeping me stable? We both decided not worth the risk right now.

Agree that you want MRIs and neuro discussion to see what is going on. If you go to a new neuro, he/she would want the discs of the most recent one you have had to compare to for any MS Progression.

[Jenaw35]

Thanks for responding KoKo, thinkimjob, pennstater

Thank you for responding.
I realize nobody can really answer my questions.
I just feel stupid for pretending I didn't/ don't have MS.
Maybe if I stayed on copaxone this wouldn't have happened. Did I cause it?
Is going to be permanent?
I have seen a neurologist since I went off meds so it's been a few years.
I have contacted my old neurologist.
He is no longer there. I'm waiting to see if they at least have my records. And possibly have another neurologist in the practice that would be willing to see me.

The thing is IDK if I should have the MRI of IAC the ENT ordered or wait to see if I can find another neurologist.
Meanwhile I'm still trying to work and care for my 5 year old granddaughter who I have shared custody with .
I feel like I'm going to pass out multiple times a day, my balance is off, legs are weak, brain fog and really hard to concentrate when people are speaking to me.
Sorry for the venting.
Thanks so much for responding

[Poolwatcher]

You def need to work with a neurologist. Could be more than one thing going on too,

[pennstater]

When you find a neurologist, let them know of your MS diagnosis, off meds, possible flare, and that you haven't had an MRI in awhile and if possible, can you get the MRI scripts ahead so that when you have your appointment, then neuro can review and discuss what is going on.

If you can't, would your primary care physician order the tests for you, given your MS diagnosis history? Then you would have your disks for neuro appointment.

Just hoping to save you a little time so you get the most out of your neuro appointment.

I hope you start to feel better soon.

[Jenaw35]

The ENT ordered a brain IAC.

When you find a neurologist, let them know of your MS diagnosis, off meds, possible flare, and that you haven't had an MRI in awhile and if possible, can you get the MRI scripts ahead so that when you have your appointment, then neuro can review and discuss what is going on.

If you can't, would your primary care physician order the tests for you, given your MS diagnosis history? Then you would have your disks for neuro appointment.

Just hoping to save you a little time so you get the most out of your neuro appointment.

I hope you start to feel better soon.

Thanks
The ENT ordered a MRI of brain IAC.
I have gotten an appointment with new neurologist for March 12. That's the earliest but he was in the same practice as my old neurologist so he can access my records.
OMG now some of my old symptoms are also happening.
My whole body is like humming from the inside especially my legs.
I had to call in sick 2 times this week.
I don't want to lose my job. But I'm gonna fall if I go there.

Any tricks to get thru the MRI?
I am suddenly claustrophobic. Never was before but the last few months even the elevator freaks me out.
Julie

[pennstater]

I don't have claustrophobia, so not sure. I know one time when in a flare, everything bothered me. I just shut my eyes and visualized my favorite place. But again, not claustrophobic.

They have open MRIs for this reason but the strength of the machine is lower, so some lesions can be missed.

I would call the neuros office and let them know. You won't be the first with the issue. It is possible they may give you something for anxiety or something to relax you.

[REG53]

Some mri's have a mirror so if you do open your eyes you can see out. If no mirror ask them to lay a cloth over you eyes so you don't open your eyes. These are the two things that help me.

I now take a .25mg Xanax also. I agree with pennstater, ask for something to relax you.

I hope all goes well.

[smalltowngirl]

I am super claustrophobic and for my thoracic MRI, I went to an “Open MRI” facility. I agree that there’s some controversy with those, as they are a little less clear than others. For my brain MRI, the hospital offered one MRI machine that was a little more open than the other and that helped me A LOT. I also took a prescribed Xanax prior to the scan, which I know contributed to my comfort. Also, deep breathing exercises helped me a little too.

Best of of luck to you— I know it’s not easy.