MS-related Vertigo: What Can You Do?

Thank you for the great article. Vertigo was actually my primary symptom. Repeated bouts of vertigo lasting for a week or more over a period of a couple of years. I finally told my doctor about these episodes and that is what lead to my diagnosis of MS. I know it isn't a common symptom, but my initial MRI showed multiple lesions including several active lesions and "black holes" from previous lesions. My vertigo has not been as active over the past several years but has been replaced by more common symptoms such as fatigue, brain fog, muscle spasms, and occasional difficulty walking as I have moved into a progressive MS diagnosis.

‘Vertigo’ was my first symptom of MS. It turned out not to be vertigo at all. The symptom of being off balance was caused by optic neuritis.

Thank you for posting this. My doctors are still trying to diagnose me, they told me they “suspect you have MS” . I have been diagnosed with Ménière’s disease at the age of eighteen which is a middle ear disease that has rotational vertigo as a main symptom. I am so tired of being a medical mystery. Too many symptoms of too many things. I bet many out there have ears similar things ?

This.

Long story but I think most will be able to relate. It seems that when I was at my worst physically, 2x it was /is "vertigo".

I am newbie here, no confirmed DX yet but here we go...

Timeline:

2006 - I was working from home and was suddenly not able to feel my left leg. I thought it was just from how I was sitting but later in the day, it went away. A few weeks go by, I was driving and experienced a blackout- was able to pull to the side of the road and called 911 then my hubby. Went to the ER , got an MRI and said they saw some bright spots and also did the physical test - but couldn't confirm it was MS!! I let it go (oh yes, the naivete of youth, invincible to almost anything).

2009 - I was traveling about 60% of the time, coast to coast. I was in LA at a dinner, and heard a pop in my ear and felt a headache coming on. I went back to the hotel, took motrin and next thing I know, my co-worker was banging on my door (next morning) and was asking if I was okay. Apparently, I missed our meet up time, it took me a while to get to the door, because I couldn't open my eyes due to the headache. He said, "you do not look good, I am calling 911". Ambulance came, brought me to the ER (which was, funny, in a way, was only a block from the hotel, but it cost me a $1K), they did an MRi of the brain, and even did a spinal tap and did not see anything. Diagnosis: severe headache. Luckily, my dad lives in CA and was able to be with me for a few days at the hotel, as I could not get up, not even eat due to the spinal tap. hubby had to come in from DC to pick me up.

From that time to about 2013, I had headaches (which I chalked it up to "migraines") and occasionally, felt numb and weak on the left side, starting from fingers to upper arms and then back down to my legs.

July 2013 went to FL for vacay, went diving with the family, that night, I was almost in tears, because my left side was acting up again. My hubby had to massage me for quite a bit of time. I took notes of when I was at my worst and it was always after an exhausting, active kind of day.

2015- I moved my family in 2013 to the bay area because of my job, everything seemed okay, hubby had work that allowed him to work remote. We knew it was going to be expensive to live there but I wanted to be closer to my family since I lost my youngest sister in 2012 and my dad had a terrible time with that. A few months later, hubby was laid off, my situation also changed but I was also able to get a contract that paid well. BUt it meant, we were down to 1 income. He was was out of work for almost a year, in silicon valley, mind you, and he is in tech. We were both stressed out, kids were not doing well in school, we had a house in DC and the renters were coming up on their contract. We decided, they were going to go ahead, while I stay and work and hopefully, get a job back in DC.

Family has been gone, not even a month - when one day, after a massage, driving home, I had a vertigo attack, I knew I had to stop and park. Went home, waited for what felt like my head was going to explode and my heart was going to jump out of my chest. I asked my friend to call 911, ambulance came, my bp was sky high that the paramedics said, they were surprised I wasn't dead. Was brought to the ER, went through some workups, and was sent home the next morning, with a DX of: migraine.

My dad flew up to SF and insisted on driving me to the nearest military base (my hubby is a veteran). Travis AFB hospital, admitted me, did what they called, "the million dollar work up", found I had empty sella syndrome, but said, it is common with women that has gone through child birth, and possible, cushings syndrome, but didn't find any tumor in the pituitary, they also thought initially, it might be MS (they said they looked at my records) but didn't find any lesions that would've told them otherwise. Sent me home and that was when I decided either I quit my job or ask for some accommodations. Luckily, the COO saw me as an asset and allowed me to work remotely from DC. He said, you can do your job from anywhere. When I got back home, I followed doctors orders to follow up with PCP, who then recommended an Endocrinologist. HE ordered test, didn't see Cushings but said that I was pre-diabetic and high bp. Put me on meds and that was the end of that horrible situation. Unfortunately, my contract ended but the company took care of me and gave me 3 months severance. I had to finally, convince myself that maybe, this came at the right time, that I should take off and do self care. My husband found a job, still meant, we were down to 1 income but we were in our home and all together. I took 6 months off and thought, we really did find what was wrong with me!

Got back to the swing of things, with occasional headache, left side weak but ignored it, even thought I was having some lapse in memory but I am in my 40's (and accepted I wasn't as quick and strong compared to when I was younger) - even did 2 5K's, worked out, did some yoga but it all came to a screeching halt sometime early this year, when the vertigo came back with a vengeance. PCP gave me meclizine, checked blood work, everything seemed to be fine. I had at least mentioned, in several convos a few of my concerns to her: the weakness / numbness on the left side , my memory was the size of a pea (had to write things down because I forgot them so quickly, I was mixing up words and also had some bladder issues, I have had to wear a pad because I couldn't seem to hold it. She referred me to a neuro, he asked some questions and diagnosed me again with a migraine and gave me a prescription and said, I will order an MRI so I can assure you it isn't anything more than a migraine. He made me feel that I was crazy to think it was more than a headache.

I wasn't happy with that and I just called an ENT /Oto and said, "i need to make an appt as this vertigo has debilitated me." Had DIX-hallpike test and saw nystagmus and said, no normal person can do what just happened with your eyes. He said, "I am thinking of 3 things, BBPV, meniere's disease or labynthisis (sp?)", I also mentioned, that I have ringing in my ear. He ordered a VNG testing, if you guys have not heard of that, look it up. It was pretty fun (not!), you go through a series of test, one of them, they blow cold/warm air in your ears and then warm /cold water while wearing this VR looking goggles and cannot close your eyes, as they have the camera recording movements. This was on November 16th, and I have not been back to work due to balance issue /dizziness, some vertigo, feeling pressure on left side of the head, brain fog and neck pain. Meanwhile, the MRI has come back but I have no idea as the neurologist isn't seeing me until January 2nd. I called the clinic that did the VNG and asked if what I was feeling was to be expected, they called back and said, "we don't know what to tell you since your test came back normal." PCP gave me toradol shot for headache and steroids for pain ( I didnt take the steroids). My luck, ENT was off Thanksgiving week. So I suffered for almost a week of all these issues, woke up Sat and thought, "wow, I feel good, that fog has lifted!" Only to be best friends again, that night with the weakness /numbness of the left side of my body. I laid on it to put pressure and was really up all night because of it.

Yesterday, I asked my hubby to drive me to Walter Reed, I said I cannot take this anymore. I told them symptoms and the duration of this vertigo drama. They took me in right away without triage, ER doctor asked me to lift my left leg and I couldn't! He said, I think we need the Neurologist to come down and see you. I had my MRI disc with me, handed it to them so they can read it but they had to find a CD player! 3 neurologists came down, asked me questions, did the same tests I went through 12 years ago, and I kept losing my balance, every time I would stretch my arms out, the side was shaking. They came back an hour later, and said, ""I saw a few white spots and some dark spots and also, the symptoms you gave us and what we saw today (that memory test -I wasn't able to give them 2 of the 3), tells me that I should not rule out MS and the MRi of the cerebral spine will give us a better idea". Left the room, and I think I was just in shock that I couldn't remember what he said, so I got up, and saw him talking to the ER doc and I asked if he can tell me again coz I do not remember, I also mentioned I was seeing my PCP tomorrow and would like to tell her. He also reminded me the will put the order in and just call tomorrow and make the appointment.. I had to write all this down on my phone, fearful that I wasn't understanding what he was saying.

Bear with me, I am almost done with this rant....

I called the ENT today to ask if they got the result, I told them where i was yesterday, the brain MRI results and the lady said, "well the doc is concerned that your VNG was normal and yet when he did the Dix Hallpike test, it was strong, he wants to examine you further and do an audiology". I am scheduled to see him tomorrow at 10:20 and they scheduled the audiology for next Wednesday.

Meanwhile, I went to see my PCP to get a note for work and mentioned everything to her, I do love her because at least, she tries and sends me to a specialist (with the blood work she has collected from me this past year, we found out I have Thalassemia and have the dominant gene for it) but when I told her what the neuro told me, 'she said, I doubt it is MS, because usually you are diagnosed with that in your 20's!" If this is true, the doctors from 12 years ago missed that opportunity. :( (thumbs down emoji - insert here)

I just said, "well, hopefully, the MRI he ordered will tell us what is wrong with me. I said, "all I want is to get to the bottom of this and if it is something, plan for the next steps".

I am patiently waiting for the 11th for the MRI but also trying to make sense of all of this. I may be in the wrong forum for right now, but I am just happy, that someone else has acknowledge it isn't all in my head.

Sorry for the long rant, I hope I do not get banned for this. :)

I will make sure to give you guys an update from a neuro and ENT stand point.

Here's to a start of a new chapter.

Be well.

CJ

Thank you for the article. I'm sad to say... it made me cry. I've been feeling vertigo for several days now. I was just getting over a particularly severe attack when I decided to find out what might be causing it and there it was.... MS. Again. So vertigo is yet another symptom I'm gonna hafta deal with? New lesions perhaps? It doesnt stop, does it? I feel like I'm in constant mourning. After reading your article, I'll be contacting my MS specialist in the morning. Time to cry myself to sleep... again. Thank you ♡