Avatar universal

Possible MS symptoms?

Almost 4 months ago (July 9th) the right side of my face started tingling and feeling numb (started in right upper lip, spread to lower right lip, and has since stayed in my full upper lip, right lower and tip of my nose).  It eventually spread to the back of my throat and somewhat in my tongue.  I still have it daily and it worsens if I feel stressed, if I get overheated or if cold air blows on it.  
Since then I've had muscle spasms (one that lasted for almost three days in my right bicep), what felt like contractions that started under my right shoulder blade and then it moved to my front rib cage area and settled in my chest (all in a week and then went away...wore a heart monitor for 24 hours and it recorded my heart rate going up to 139 beats and stayed there for 89 beats), woke up Saturday night to my big toe throbbing so bad I couldn't sleep but have had no pain in it since then, and have had throbbing pain in my eye since Saturday (diagnosed today with uveitis).
I have had a clear spinal MRI, 8 small lesions in my frontal lobes in a brain MRI, clear lumbar puncture, clear vision provoking test, blood work is all great except a minor vitamin d deficiency and I've had three rounds even some sent out of state to test for all autoimmune diseases, lymes was negative as well.
Had shoulder MRI's (could be separate issue) which revealed mild tendinopathy and small amounts of fluid.
Neurologist thinks it could be early MS but because no tests have proven it is we just wait.  I am 38 yo female and before July 9th didn't even have a family doc because I never got sick.
Any help or suggestions anyone can give me would be greatly appreciated!  
Next step is repeat brain MRI in December but feeling like I was almost blinded the last few days have made me really nervous and wanting to seek treatment faster but can't without a diagnosis:-(
4 Responses
987762 tn?1331027953
Hi and welcome,

I'm sorry, i seemed to of missed your post until just now, it's quite late over my side of the world so i need to get to bed, but before logging off for the day I just wanted to pass on some information regarding Uveitis and it;s association with MS....

"Diagnosed in approximately 38,000 Americans a year, uveitis causes swelling and irritation of the middle layer of the eye and can lead to permanent vision loss if left untreated. It is well established in the medical community that uveitis can be a sign of MS and it is estimated that 1 to 10 percent of MS patients have uveitis. The disease affects approximately 2.3 million people worldwide, causes irreversible nerve deterioration and is notoriously difficult to diagnose."


and let you know that I will respond with more information for you over the weekend.

Hope that helps.......JJ
Avatar universal
Thank you for your response!  

Since my initial facial numbness and other symptoms my nuerolgist has thought it was MS but no outside testing (besides the lesions) have shown any concrete evidence.  If it was early MS is it possible to not show up on the LP and not enhance on an MRI?

Thank you again!
667078 tn?1316000935
How long has your Neurologist who thinks it is MS been following you? Sometimes it takes two years for a diagnosis. Only a neurologist can diagnose MS. They go by the MC Donald criteria. You might look it up. It is to long to type out.
I've only been going since September which I know isn't much time.  It's just so hard to keep having things happen (scary to me) and not have an answer.  I've read all the criteria that they look for and those are all the tests I've had done so far.  Since the symptoms have only been for 4 months is it too soon to see on some of these tests?
987762 tn?1331027953
Q: "If it was early MS is it possible to not show up on the LP and not enhance on an MRI? "

A: Yes it's possible to have MS and the MRI not catch the demyelinating lesions under attack and enhancing. There is an estimated time window of approx 30-45 days to the average length of an MS attack, and if the MRI was done outside that window the MRI wouldn't necessarily catch the lesions enhancing.

There is a higher proportion of MSers that have 2+ Obands show up on their LP but there are approx 10-15% who are diagnosed with MS with normal LP results but they still have all the other suggestive/consistent diagnostic evidence eg MRI's, VEP's, abnormal neurological clinical signs etc.

Q: "Since the symptoms have only been for 4 months is it too soon to see on some of these tests?"

A: Theoretically yes but keep in mind that in that same light, it's also possible that what you are experiencing is not being caused by an underlying neurological condition like MS when there isn't the suggestive/consistent test evidence.

You'll probably need a lot more tests to work out what might be going on, MS is only one possibility but there would be a higher chance of you 'not' being diagnosed with MS 'if' all the abnormal test evidence you actually do have, could also account for the symptoms you've experienced and point in a different direction.

"Uveitis can be associated with many diseases including:

Ankylosing spondylitis
Behcet’s syndrome
CMV retinitis
Herpes zoster infection
Kawasaki disease
Multiple sclerosis
Reactive arthritis
Rheumatoid arthritis
Ulcerative colitis
Vogt Koyanagi Harada’s disease"

At this stage of testing, try if you can to not get too focused on the possibility that is might be MS, it honestly might not turn out to be MS....breath!  

Hope that helps.........JJ
Thank you so much for all your help and suggestions!  Hopefully some day I'll be able to come back and post what it is so maybe I could help someone else in the same position.  It's been a stressful four months and I've learned the most from reading similar things that others have gone through.
Thank you again!!
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