Hi all , I wanted to ask I have suffered from vestibular migraine 10 years ( chronic vertigo living hell. . But i was great for 3 years. Had mri in 2019 all clear. Then in June I had my gallbladder removed and well all.wemt down from there. Dizziness showed up and never left. Every which way I move my head I'm dizzy. Then panic then dizzy. Oh what a cycle. I had a bad spell , called ambulance Then went dr next say. Got am an mri and 2 lesions. Went for spine mri and all.clear. neurologist think ms but how? Could it be inflammation from surgery and stress? Are 2 lesions enough to diagnose? All other bloods are also clear. Is.ms chronic dizziness? I felt like this with vestibular migraine, I'm so scared. Any one for some advice? Hugs from Australia 🇦🇺
I'm scared. : Hi all , I wanted to ask I... - My MSAA Community
I'm scared.
Welcome! I'm sorry to hear about all that you have suffered. Given the migraines, I would want a second opinion to be sure. MS Specialists are great for confirming a diagnosis, though they usually have a fully booked schedule for months in advance. They will want to see your old and new scans. There may be posts in this site you can search for, related to dizziness, as some of us probably have tricks for living with it. I wouldn't say we all have that, or all have any one symptom, it varies wildly. MSAA's website offers great resources which may help to answer questions regarding diagnosis and symptoms. I hope this helps!
I will definitely get that second opinion! Thank you for replying
Excellent! 🎉 Please let us know how it goes, and try not to stress yourself over this while you wait, as it may take a bit of time.
Do you get chronic dizziness feeling faint , vertigo?
Mine is generally short lived during a relapse event, and I'll say it's mild because I've never vomited or fallen where I've been really hurt. The longest has been 6 weeks and the worst of that was for 3 days.
I was a firefighter for almost 30 years and never had a problem climbing ladders or anything else to do with heights. Now with my MS, it scares me to watch movies with people at heights. The movie, "True Lies", has a scene where a girl is on a crane on top of a skyscraper. I like the movie, but that scene scatres me more than any Halloween type picture. My balance is not very good, but I always have my walker.
I just had the worst case of vertigo ever!!! My sister in law sent me this link. Not sure if it will help you at all, but it helped me a ton!
youtu.be/mQR6b7CAiqk?featur...
Do you have ms? Is it one of your symptoms?
Yes. I’ve had MS for nearly 24 years. Dizziness is not normally one of my symptoms though I’ve had brief moments with it in the past. However I recently had Covid and ended up with severe vertigo. Ended up going to the emergency room by ambulance. It took nearly a week after that to clear up and only from these exercises.
Its been my worst symptom amd chronic feeling faint and dizzy. May I message you if you don't mind? If i may, i would like to ask some questions about ms if that's OK?
sure. Message me
Hello I had a vestibular loss from ear infection ten years before being diagnosed with MS. Dr's couldn't figure out why other side didn't take over. I used to tell people, I'm just a dizzy broad.
I have had PT twice, specially for vestibular issues, it's really helpful. Trains the brain to adapt to dizziness and not lose balance.
I understand that a spinal tap is also used to confirm MS. MS is chronic and symptoms are variable.
I was reading through to see if anyone mentioned the spinal tap/lumbar puncture. Glad to see you did.
Also, see a neuro who specializes in MS. I was diagnosed in 2014 and still don't have lesions on my spine. So not having lesions there doesn't mean you don't have MS.
If the answer comes back but if if you do, actually have MS, stay calm. It is not a death sentence and once you have an answer, you get on meds right away which helps you not progress. It may take several tries to find the one that works the best for you, so don't get discouraged. My 3rd was the one. I had reactions to the 1st two.
Let us know how things go and good luck!
I don't have spinal lesions, either, and I've been dealing with this for 40+ years. I did get my diagnosis after the spinal tap, though.
Do you take medicine?
No. My doctor felt I was too far gone for anything except Ocrevus, and I tried the first two half-doses and had too many complications with it. I just treat my symptoms as they come along. Knock on wood, I haven't had any new lesions in a couple years now.
How often do you go for mri, do you eat a specific way?
The MRI's are yearly now. No special diet. I credit the good parts of my health to a childhood spent active and outdoors every day, with plenty of sunshine and well-balanced meals. Of course, for the last 40-some years I've been locked in offices, survived on junk food, and smoked way too much!
I'm sorry to hear that you've been given a diagnosis but not any guidance as to what it means. I agree with others that you need to confirm the diagnosis. I know it's hard, but please try not to worry until you can get more information. MS is so very different for everyone that even if you have it, you can't jump to conclusions about what it might be like for you. There are so many treatments now that weren't available just a few decades ago. I hope all goes well for you!
See a neurologist who specialises in ms and good luck
You are the first person that has described my symptoms. I have suffered from the sever vertigo13 plus years. Most of my vestibular nerve is gone and it is a rare form of ms to have lessisions attacking the vestibular nerve .
It is something you have to get used to. I can't go to the grocery anymore because the movement of my head and the crowd.
I don't go anywhere there is going to be a large crowd. In my early days I went to a professional baseball game and trying to make it through the crowd was to much and I went down. Get use to some some falls.
The meds I tack could knock out a horse.
For the dizziness I take 75 MG of Meclizine and another dose mid day.
I also take Diazepam 10 MG twice a day.
Due to the fact that they both cause extreme fatigue I also take 40mg of extended release Rittilin and have 10mg of immediate release Rittilin.
Not a cure but gets me through the day in the house.
There is PT for vestibular issues but you need a pool.
Good luck with things and get on a good DMT.
I'll be thinking of you.
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