Help, Please!?!?!? Is Vertigo common with MS?

For the last three years I have been living with multiple symptoms, with multiple diagnoses, some that I question more and more on a daily basis.  

My symptoms include:
a burning pain in muscles, numbness in extremities, loss of sensation in parts of bodies, stiffness, major fatigue, depression, major headaches, spasticity, spasms, myoclonus, restless leg, tingling in head and extremities, vibration sensations, buzzing sensations when moving head from time to time, anxiety, major cognitive dysfunction, sleeping dysfunctions, inability to feel and recognize touches unless they are visual, muscle weakness – especially in extremities, extra tension in arms and legs with usage, chronic indigestion, walking (I have a gait), constant state of tiredness – inability to complete most tasks – moving or lifting items, exercising, walking, carrying grocery, brushing hair, etc.

To make the situation worse on October 28th I woke up and the room was spinning and has been since.  As soon as my Neurologist's office opened I called and informed them of the fact that I was unable to walk with out running into items or falling completely down.  The nurse told me to lie down immediately and to do nothing until she called back.  When she called back, she told me to either go straight to the ER or come there.  I was told that I was suffering from Vertigo.  Unfortunately he has refused to do any testing, just take me off of medication the last few months, which has not helped.

My Rheumatologist last month looked in my ear and noticed that my eardrum was swollen remarkably on the right side so decided to send me to my ENT.  He also decided before the appointment to prescribe two weeks of high dose prednisone 4 5mg tablets in the am, and 4 at night as well as two 600 mg antibiotics daily for two weeks.  This helped the eardrum go down as well as the apparent ear infection I had at the time.  The ENT said that it could have made the Vertigo worse, but was not the main cause, and in turn sent me for an MRI with and w/o contrast and well as Vestibular PT.  I had already done the Vestibular PT eval just 6 weeks in advance.

This time the results were much worse she said, she didn't give me the results from the first time.  This time though when she scored me standing still and doing a few different exercises I scored only 13 out of 24.  When she scored me for gait it was 8 out of 24, so both are pretty poor.  She said that she hasn't seen it get that bad that quickly.

I do have my a copy of my MRI results and just had a question as to, should there be any white areas on the scan?  I do see several white spots on the back lobe upper area, as well as the middle lower area.  I see a few others, what scares me is the last time I had scans two years ago I had no white ares.  What are some causes of white ares on MRIs?  What are some causes of Vertigo?  Could it get to the point where I no longer have any balance?

[thester6474]

I have been proved to have a positive Babinski on one side, the right side I believe.  Just never anything else to get a positive diagnosis of anything more than just Lyme Disease or Fibromyalgia.

[Lulu54]

Yes  vertigo is a common symptom of MS patients.  Have you been diagnosed with MS or are you still in limbo?  

White spots on the brain are usually something that the neurologist is going to look at and tell you what they are caused by............. lesions are a common thought if they are considering MS.  Did you get a copy of the radiologist's report?  You should have that to refer to when you look at your pictures.

good luck with your journey - it sure doesn't get easier, does it?

my best,
Lulu

[thester6474]

No, I haven't been diagnosed with MS yet, I have been in limbo land for a total of three whole years.

[thester6474]

Anyone with Vertigo need the use of assistive devices such as a walker or wheelchair?  My physical therapist just ordered a walker for me, and I feel as though my world has been turned upside down.  If so how did you deal with the grief?  And has it been a permanent change or was it just temporary?

[Lulu54]

You are so young to be dealing with this and can certainly understand your tremendous sense of grief.

I saw your post on the neurology forum and suggested you post this here - be sure and check out the health page link I posted on acceptance.  It talks a lot about grief, too.

With the type of vertigo you have experienced the use of a  cane or walker would be a very good idea to keep you upright.

I have not had vertigo but my mother has it. I feel so sorry for her when it hits.  

Can anyone else with vertigo give thester advice on coping and getting by?

feel better,
Lulu

[jensequitur]

I had vertigo for six months, but I never used an assistive device - I just hung onto the walls if I was having trouble.  A cane was useful if I was outside, so I could use it as a third leg.

The good news is that if it is MS, then you probably won't have vertigo for your entire life!  On average it takes three months for neurological damage to heal, and more if it's severe.

[supermum_ms]

I'm a strong believer in brain plasticity, MS wasn't even on the radar when i first started loosing my balance, i cant even remember when it started, simply years and years ago but it always went away.

2009 had me walking like a string puppet, vertigo and a hoast of other unfriendly things, i used walls, furniture, my children, anything to guide me whilst offering support, sometimes i even crawled. My brother got me a folding walking stick, but i still needed something, a wall or a person on the other side because the vertigo kept me off balance, a stick did help but i really needed a walker. I needed help with mobility and a walker was something i was looking into, what colour, a triangle type or square and then the vertigo suddenly stopped, and i was left with just the string puppet walking and things didn't seem so bad. It wasnt long before that started getting better and i didn't need more than the walls and furniture again, eventually i needed no help.

April to August I had mobility issues, i just kept on moving because with brain plasticity if your brain can rewire it will if you keep simulating the process, if you dont move it you loose it type of thinking. I tend to look at things as temperary, and do what ever needs doing to keep on moving.

Cheers.......JJ

[starryeyes1]

I just read your post. I have had severe balance problems since my first real symptom. I have been in PT which helps in learning how to balance because its a lesion that is causing this problem. My dizziness never goes away.

Its been about 2 yrs since it started and I am now ready to try a cane. I honestly didn't think it would help me if I got dizzy. I use the shopping carts at the stores which really mask that I have a problem.It keeps me balanced.

Did your Dr say that you absolutely need a walker? That is a hard pill to swallow. Someone suggested it to me and I just wasn't ready. I completely understand how you feel. If there is a way to try a cane first, do try. It may not be enough, but its worth a try.

Good Luck and we are all here for you!

Hugs
Kristi

[thester6474]

Where was the lesion located?  And what was the final diagnosis?  I cannot even stand upright with her help, I still either fall to the left or to the back.  How is the vertigo now?

[starryeyes1]

I have 4 lesions. Apparently, the lesion on the pons is the one causing dizziness. I was diagnosed with MS last June after having symptoms such as tingling/numbness in my legs, blurry vision in left eye, balance trouble,numb tongue..

I had been to 2 different neuro's in Tucson and finally got so fed up with idiots that I took a chance on visiting an MS center where the specialist diagnosed me within 10 min.

I know without a doubt that if I hadn't left the state to see a specialist, I would still be undiagnosed and not  on any DMD. My Vertigo is if I look up and sometimes side to side..Also, in bed when I turn over the room spins but Its my balance that is the worst.

I have friends who have had vertigo and stroids helped them. Not sure if this is an option or not when not diagnosed. Take care and keep us posted.

Kristi

[thester6474]

I was on steroids for two whole weeks and it didn't help at all.

[Lulu54]

Ordinary oral steroids won't normally help this type of inflammation.  They can't be given in the potency that is required here.

What you might want to request is IV solumedrol - it is given several days in a row and then you use an oral steroid to taper off.  You might call and ask the doctor if that could be an option for you.

Lu

[starryeyes1]

Lu is right. The intravenous steroid is what they give for inflammation.. I haven't had to do that yet. When I first saw my neuro, I thought that if he put me on steroids that would "fix" whatever was causing the balance problem.

He said that maybe it would have helped if it was done when I first became dizzy, but because it went untreated for so long, it was permanent. That really upset me because I blamed the last neuro for waiting and brushing me off.

He made me feel like I was crazy, that I needed counseling and all along he could have been trying to help me. When I got my dx, I had the MS spec send copies of the notes to the other neuro I guess to prove to him that I was right and he was wrong.

That Copaxone is not bad and does help people with the relapses and lesion growth. I want to slow this down as much as possible.

Good Luck and I will include you in my prayers!

Kristi

[thester6474]

My Neuro hasn't even done any normal neurological examinations, some of the appointments he was feet away from me during the appointment.  He has also sent me to a Psychiatrist, there is nothing wrong with me mentally, he has refused to do any Neurological testing in the last two years.  All of my doctors find that hard to believe, and state that I should definetly leave him alone.  I have thought about going to the MS Center we have in northern Georgia, but have yet to make an appointment.  I do have an appointment with a new Neuro this coming week.  So hopefully this one will bemore caring and efficient.

[thester6474]

It is so bad that one foot goes in front of the other when walking, I wonder what is causing this.

[thester6474]

My new Neurologist, the one that I was scheduled to see, until I could see the other, was really surprised to see how bad the Vertigo was.  And to see how poorly it was treated.  He was really blunt, and was really blunt when he called the other Neuro a donkey (not the actual name he used).  He stated that if the Vertigo started in October then the MRIs and all of the other testing should have started in November.  He was also surprised at the fact that I was unable to stand even 5 seconds without falling to one side or backwards by myself.  He also started checking for Nystagmus, and I was surprised at how long he would stare at my eyes before he would actually tell me say anything.  I am wondering if he saw anything strange, but he also stated that he wouldn't be upset if I decided to go elsewhere in the end,  if I find that after treatment with him I am still unsatisfied.  He was really nice and has decided to redo the ENG, do a Lumbar Puncture as well as a Lyme Titre and a few other things.  He is so concerned with the Vertigo, its causes and the severity of it, he suggested that I keep my other appointment with my Neuro in Savannah (the one that I couldn't see until next month) for a consult.  This has me really concerned as to what could be causing it, and how severe it could get.  He has suggested that I limit my driving and that I walk only with my walker.   What a bummer.   Any ideas?

[essdipity]

Take care of yourself, girl. It sounds as if you're finally getting some good care. Make that last jerk ancient history.

ess

[thester6474]

I do have Lyme Disease, I was actually diagnosed with it back in January of 2007 and given a small dosage of antibiotics.  We aren't really sure that they did anything to irradicate it though.  I see that it can cause Meningitis and Encephalitis, I am certainly hoping that we are one step closer to finding out the root cause of all my problems.  But I see that there are no treatments for either of these, which scare me.  I have redone the ENG, and it shows that since I had it done in November that I have less usage of my right ear.  So there is something affecting the right ear and its nerve, just aren't quite sure, what.  My PCPs first thoughts were of course the two conditions I mentioned earlier, and when I saw that they can indeed be caused by Lyme it has me concerned.

[thester6474]

I just got several of my medical records, including MRIs, and doctor's notes for my upcoming appointment at Emory University.  I am not sure I have the energy or desire to keep the appointment however.  My sorry excuse for a Neurologist here, finally ruled my Vertigo as Central Vertigo, but left it there and decided to ask if I would like a referral to another doctor since he was at an impass.  Looking at the reports from my last MRI scan it states the following:

ON AXIAL FLAIR AND T2-WEIGHETD IMAGES ARE SOME VERY SMALL PLAQUES IN
THE BIFRONTAL SUBCORTICAL MARGIN. THERE ARE NO ADDITIONAL
PERIVENTRICULAR PLAQUES SEEN.    THE LARGEST PLAQUE MEASURES APPROXIMATELY 3 MM AND IS BEST SEEN IN THE LEFT FRONTAL LOBE ON T2-WEIGTHED AXIAL IMAGE 16.  

This is the second MRI in the row that I have had that had plaques, the last one had two that were hypersensitive and were taken in February.  This was taken in May and showed a few more according to him.

As for my LP it stated:
Opening pressure was 70.

Any suggestions, comments or concerns?

[missy72450]

I woke up October 16th without the ability to hear in the left ear. The following Thursday I could not stand at all because of the vertigo. I went to the ER becaus I thought I had had a stroke. After a 2 month round of high dose steroids and 6 weeks of PT I was able to walk with a tripod cane. I can walk unassisted today but the vertigo is not gone. some days are worse than others. Valium 5mg 1-3 times a day works wonders for this symptom as well as the buzzing symptoms. This was prescribed to me by the ENT they sent me to thnking I had a vestibular neuroma which I did not. If you are not using anythig for the symptom you might ask about this.

[thester6474]

I am not currently taking anything, I was using the patch but was told to come off of it.  So I have been living with this completely medication free, it is hard.  I do not have buzzing, and have been completely cleared by the ENT.  They say it is more Neurological than anything else.