MS question

[jcvhr1970]

I'm a 36y/o female. Started having significant balance issues back in Feb/March. Would have several bad days then several good days. Have feelings of spasms in ears and facial pain and numbness as well as fatigue and cognitive fog. Saw audiologist because I thought it was my ears they said go to GP. Finally went GP mid April had MRI showed "a least 2 foci of T2 hyperintensity in base of right and left pons. (Balance nerve-8th cranial nerve) Went to neuro (at MS clinic) he does alot tests says he can't tell could be could not be. (cognitive, blood work up no EVP) Sent me for contrast MRI 2 weeks ago haven't heard a thing. I have a follow up on 26th. They told me he would call but he hasn't. Do doctors usually wait for follow up to tell whats going on? I'm sure they would call if it were 'Really" bad but would they just wait for follow up if it was MS? I still have issues and they come and go except the fatigue that is pretty constant. Would the ear, dizzy, pons thing all be related to MS? I'm trying to figure out if I should just go to ENT?  Any input would be appreciated. Thnaks much

[Joanna Fong, MD]

Hi jcvhr1970.  I agree with your neurologist that the hyperintense lesions on the pons can be multiple sclerosis (MS) or other forms of demyelinating diseases similar to MS.  MS is caused by dysregulation of the peripheral immune system leading to injury in the central nervous system. Its pathogenesis requires the combination of a genetically susceptible individual and a particular environmental trigger.  Multiple sclerosis (MS) is characterized by recurrent episodes of demyelination in the central nervous system (CNS) separated in space and time.

Ninety percent of affected adults have relapsing-remitting multiple sclerosis (RRMS) with a clinical course characterized by intermittent attacks of increased disability followed by either partial or complete recovery to their baseline functioning.

It is important to monitor the disease by both your symptoms and imaging (MRI).  Typically, MRI needs to be done routinely to monitor the progression of the lesions.   In additional to imaging studies such as MRI, lumbar puncture is key to support the diagnosis of demyelinating diseases.

Other forms of demyelinating diseases are:  acute disseminated encephalomyelitis (ADEM), transverse myelitis, Neuromyelitis optica (NMO) also known as Devic's disease.

Other possible but less likely causes:

1) Stroke (MRI of brain should be able to tell whether the lesions are related to stroke).
2) CNS Infection (Acute bacterial or viral infections, Lyme disease, West Nile virus, syphilis, and HIV
Mitochondrial disease)  
3) Vitamin deficiency B12, folate  
4) CNS malignancy (Lymphoma, high grade glioma)
5) Granulomatous diseases (Neurosarcoidosis, Wegener's granulomatosis)
6) Inflammatory disease (ADEM, SLE, Antiphospholipid antibody syndrome, Sjogren's disease, Behcet's disease)

Good luck.

THIS INFORMATION IS PROVIDED FOR GENERAL MEDICAL EDUCATION PURPOSE ONLY.  PLEASE CONTACT YOUR PHYSICIAN FOR DIAGNOSTIC AND TREATMENT.

[jcvhr1970]

FYI-I'm posting this in several places just trying to give more detail everytime. (total neurotic of me!) Thanks again

[caramac22]

hi can't help a lot.

are you in the UK? sounds like you are saying GP.  if you are in the UK then they won't give you info on the phone. either they will write to your GP or more likely give your results at the follow up.  anyhow good luck and i hope you get answers soon.  its hell not knowing.

[caramac22]

sorry, relly can't help a lot. are you in the Uk? i think you might be saying GP. if you are, the hospitals will not give results over the phone. either they will write to your gp or tell you directly at the follow up. hope this helps. good luck as the waiting and not knowing is the worst part. i hope you get answers soon.

[JonM]

When I was diagnosed with MS, my neurologist really wanted to rule out everything else first.  MS is not clear, positively defined so it has a tendency to be whats left.  They also may hesitate since your clinical presentation isn't classic MS.  Have you had any vision problems? or feeling of weakness in a leg or arm? Even years ago?  If it is MS don't fret over the slow diagnosis, its kinda like "hurry up and wait", since it is slow in progression and is rarely deadly and there's no cure, there's not much to gain (other than peace of mind) getting it diagnosed a little quicker.

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my storey

I had my legs go numb,had electric shocks, had burning.
had my leg feel like jello and gave out on me.walked with a cane
last year

I later found out it was late stage of neurologic lyme disease.
many dumb Dr.'s misdiagnosed me for YEARS!!!!!!!!!!!!!!!!!!!

PLEASE get checked through Igenex lab  in CA.
or MDL  lab in NJ
NOT QUEST...

wake up people this is a serious problem



and doctors are down playing this disease! insurance Companies
don't wanna pay long time meds.

It took IV of Rocephin for 3 months ( it's hard on Gallbladder)
had Clarthmycin & Doxy now Mino, Plaqinal,Mepron switched on
and off for 13 months.I walk much better, I had it BAD!
it takes time.so hang tuff

Lyme Disease  is wide spread through out USA and UK
it is more so in the Eastcoast.

please check out Lymedisease.net

all the sites read peoples stories
everyone has different symtoms but same disease.
I have gone misdiagnosed for 8 years.
no rash no bulls eye,I dragged my leg and my brain is foggy,
it hit me after my back fusion surgery
so this was in my body and a trauma set it off.

my eyes had floaters
my ears were TOO sensitive my eyes too.
I cough ALOT
my headaches and joint pains are better and my balance is better
I walk at a faster gate then before.

I still can't run
I walk upstairs slowly but better then before.
kneecaps stll hurt abit still.
My anixety and beating heart is better,
I cry less my moods are better
my groin pain is gone,
I'm not constipated as before (acidilphilus helps everyday)
My memorie and writing is still not great.
the electric shock  down my legs & burning in hands are gone.
my ankles are numb and toes too, but lessen up abit

my right side is worse then left but leg numbness isn't like it was.

all because of antibiotics and time.
find a GOOD Infectious disease Dr. even if you must travel.

some come to a Dr. in Hyde Park NY. from UK.

AND  A SPINAL TAP does not show up signs of lyme
you can lose your mind,your emotions, your muscles
it can effect your heart