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  • busymom2five
    Could I have facial numbness caused by MS without brain lesions? I had an MRI of my brain recently, and it came back clear. Nothing has been checked on my spine. I've had a lot of numbness, mostly on the right side of my head, since October. In the beginning I also had it spread down my neck, across the back of my shoulders, and down my LEFT arm. Because the numbness is primarily on my head, that would require something on the brain, right? My doc is running out of ideas, and the neurologist told me it was all in my head. My doc has mentioned MS a couple of times, so I wanted to look into it.

    Also - from about 2003-2006 I was having very strange episodes. I would get some serious brain fog and my coordination and speech would be severely affected. The brain fog would clear after a little while, but I would be left with difficulty walking for the rest of the day. These episodes occured fairly often. Then, when I was pregnant with my first child in 2006, they stopped.

    This is a very abbreviated version of the story, but I think it covers the main points. Thanks for reading it, and for any input you can give me!

  • BikeMama
    Hi Tiffany,

    I'm so sorry for your circumstances.  Your symptoms sound very similar to mine and probably many others on this site.  I was diagnosed in Sept 2012 with no brain or spine lesions.  A positive lumbar puncture is what led to the diagnosis.  I had a follow up brain MRI after a year, still no lesions but still plenty of symptoms.  Lesions and symptoms are not necessarily linked.  MS Hug is one of the more recent symptoms that I've experienced.  Neuro suggested I have another spinal MRI because a lesion could be causing the hug.  However, I could still experience the hug without having a spinal lesion.  Awesome disease!

    I strongly recommend you read all that you can about MS.  You'll be surprised how much information you'll find on just how many doctors don't know much or anything about MS.  And  switch to a Neuro that specializes in MS.  Not all Neuros are created equal.  MS is very difficult to diagnose and an MS Neuro will test for all sorts of things that must be ruled out before it might be narrowed down or confirmed to be MS.  Firmly advocate for yourself and if you don't click with your new MS Neuro - GET ANOTHER ONE!  Mine is one of the best in the field and tremendously knowlegable, but not a good communicator.  So I'm looking for another one.  I'm not going to spend the rest of my life with this disease and not have the best and most comprehensive care. 

    I wish you the best and hope you'll keep us posted.

    Warm regards,
  • busymom2five
    Thank you SO much for your reply!! It's good to know that I'm not totally crazy for thinking MS is a possibility! It's a scary diagnosis, but I would much rather know for sure what I'm dealing with! Unfortunately, there is only one office of neurologists in our area. The neurologist I saw today wouldn't even consider MS because I didn't have any lesions showing on the MRI. In order to get an MS specialist, I will probably have to drive 5 hours!! (And no, that is not an exaggeration! I wish it was!) I go back to my primary doctor on Monday. Is there anything that I should be requesting from him? I need to try not to focus on MS too much. I know there's a high probability of a different cause for my symptoms. I just have no idea what it could be. One thing I know for sure - it is not in my head. The neurologist even suggested that they could be symptoms of hyperventilation. I was not impressed. I live in such a secluded area, we have pathetic medical care!

    You mentioned a lumbar puncture. How awful is it? I know in general what it is, and it doesn't sound pleasant. Is the risk of injury very high? If one is ordered, should I consider going out of the area to avoid our local medical care?

    Thanks again for your reply! It's nice to connect with people that know MS. 

  • plaquemom
    i am interested in learning more about your journey to diagnosis....
    i have NO lesions but my neurologist is convinced I have MS
    Other doctors all day "you cannot have ms without lesions"- meanwhile after four years my disability is profundly
    inxreasing month by month
    i can't write (or type well as u can see) and my fatigue is so intense I fall asleep on high doses of adderrall (without diagnosis insurance won't pay for anything else) gait is now's been four years of progressing symptoms that have destroyed my life....
    i have had evp, spinal tap, ncs, emg, multiple mris including one at 5t but never one of my ENTIRE spine only the c spine...mra, etc etc.  all are completely negative but I do have significant atrophy of brain ....
    anyway just curious if you are willing to share more details of your ms diagnosis I'd be so appreciative
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  • johnjr1964
    My initial experience was similar. Left half of head started going numb, followed by burning that traveled all the way done to my jaw and tongue. Only one side. Started slurring speech. Felt like leaving the dentist office after novacaine. Then trouble placing words. My wife is a dentist so we went and took an X-ray. Nothing showed. Went to the primary doc. He sent me to the one neuro in my area. It then becomes a series of blood work, followed by evoke potentials, followed by MRI to get an official diagnosis. Each time is went from possible, to probable, to MS. The difference with me is that I had 3 lesions. Just wanted to share my experience and I won't try and compare or diagnose your situation. It is good your in tune with what is going on with your body. Get a med journal and keep track of all happening as far as when, where on your body, how long, etc. it may be something but who knows what it may end up being, if anything. Don't give up searching.
  • BikeMama
    Great point about keeping the journal, johnjr1964!  I do that as well.  There is no way to remember all that happens and how long it lasts.

    Lumbar puncture isn't bad if the one doing it has done hundreds of them.  I didn't have any pain at all!  The only problem I had with it goes back to my Neuros poor communication...  I was told to "take it easy" the rest of the day.  I ended up with a headache that was like an exponential migraine.  Turns out I should have been instructed to lie flat for a number of hours and this all could have been avoided.  The LB hole is minute but needs time to seal back up and lying down facilitates this and also prevents losing spinal fluid pressure in the head, which causes the headache. 

    I'm so sorry you are so far away from other care options.  I felt like I was crazy too until I got  the diagnosis.  Then I still felt a little crazy for a while after that just because the symptoms are odd, unpredictable and random. 

    Keep using us on the forum, lots of support to be had here!
  • KVR
    Experiencing very same things you are. So relieved to know I am not the only one.
  • busymom2five
    This all started at the end of October. I didn't get my MRI until Dec 1st (almost 5 weeks). I didn't get to see a neurologist until January 8th (7.5 weeks after it was ordered). That's how the medical care goes around here. It's ridiculous. I had my dr refer me to the MS clinic 5 hrs away. My dr appt was Monday of this week, at 5pm. Thursday I already had the call from Stanford to schedule my appointment, which is set for the 27th of this month. I could have had an appt on the 22nd. So only 2 weeks after I saw my dr, I'll be seen by an MS specialist. I love Stanford!

    Also - my dr commented that it doesn't matter in MS if you don't get on meds right away. He compared it to cancer, where the sooner you get treatment the better. Is that true?

  • busymom2five
    I had my appointment on Monday with the MS specialist. Great news - not MS! Still not totally sure what it is, but at least it's not MS. She wants me to be seen at the headache clinic to see if it's maybe a form of a migraine. If they don't think it's a headache, she wants me to see somebody about the possibility of it being an autonomic disorder. (That's the nervous system that controls the involuntary functions such as your heart and lungs.) She is also concerned about my tachycardia (my pulse was 134), and was surprised I had not seen a cardiologist. She wants my dr to follow that closely. So - still no answer, but I am so relieved to have MS ruled out. She was very competent and really listened and took everything into consideration. I was very pleased with my appointment and was glad I traveled the 5 hours to see her.

    Good luck to all of you, and thank you so much for your input!!

  • jane907

    Hi, You should be tested for Lyme Disease. I have had Lyme since 1994 and my symptoms are nearly identical to yours. Lyme mimics MS,with and without the brain lesions. Get tested for that (NOT the western blot test 93% false-negative rates), and if you are positive then take the antibiotics and you should see your MS symptoms disappear. Then come back to your MS MD for more testing....I hope this helps!

  • hopelymeresearch
    This is definitely Lyme disease and possible Co infections. Please watch the movie under our skin and I'll send you links to it and my Lyme journey so sorry your going through this many many prayers and much love. Add me to fb hope savoie Https:// Under Our Skin My lyme disease journey:
  • OmneTempus
    Hi there, I know this thread is old, but I was wondering if you'd had a diagnosis yet? It sounds like you might have Postural Orthostatic Tachycardia Syndrome and/or Dysautonomia.
    Hope you are well.
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