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numbness in left arm, weird thing…in my tongue, often in my left leg
Posted: 15 January 2012 06:46 PM   [ Ignore ]  
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I can’t ever remember having numbness before my neck injuries.  Still no sign of being diagnosed with an autonomic dysfunction but they still suspect it.  Should I get on the phone to my doc again?  I swear she is going to start hanging up on me.  LOL If you don’t laugh you’ll cry right?!  But yeah, having a lot of numbness, tingling only left side.  The weird thing is my tongue gets numb and my muscles of mastication become stiff and it is hard to eat when I don’t feel well.  My BP has been going crazy all weekend.  Really high..seen 170/104 and down to normal when I lay down.  But takes a while.  Another funny thing is I can feel my BP change after I wake up but I’m still in bed.  Any idea as to what is going on Dr Diana?

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Posted: 19 January 2012 02:21 PM   [ Ignore ]   [ # 1 ]  
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Not a doctor, but obviously our body is NOT happy about something. Your BP is telling you that. Since you have no dysautonmia diagnosis here is the poor mans tilt table test. NOTE- only do this if you feel comfortable doing it. If you have a BP cuff or pulse ox it makes it easier, but if not you can do this by just taking your pulse. Sit or lay down in a resting position for 10 minutes or so. Long enough for you to feel like our body has acclimated and has calmed down. Take your heart rate (and BP if you can). Now, stand up and immediately take your heart rate (and BP) again.  If your heart rate goes up more than 30 beats per minute there’s a problem. It’s called POTS. You can keep standing if you want and take a few more readings to see what your BP and heart rate does but honestly you probably aren’t going to feel good from the sounds of what our have already written.

As for the trouble chewing and tongue numbness, depending on if it’s the front of our tongue or back of our tongue certain cranial nerves are probably being compromised. The 9th cranial nerve is responsible for the gag reflex and the back 1/3 of the tongue.  The 7th cranial nerve controls the front 2/3rds of the tongue, salivary glands, and other functions.  http://en.wikipedia.org/wiki/Cranial_nerve  Nerves can be compromised for lots of reasons but in our situations intercranial hypertension is a good first guess. The 9th cranial nerve is buried deep in the brain and is supposed to be hard to injure.

Anyway, the poor mans tilt table is a good place to start.  Here is more info on POTS. http://www.dinet.org/pots_an_overview.htm

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Posted: 06 February 2012 08:12 PM   [ Ignore ]   [ # 2 ]  
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Melania - 15 January 2012 06:46 PM

I can’t ever remember having numbness before my neck injuries.  Still no sign of being diagnosed with an autonomic dysfunction but they still suspect it.  Should I get on the phone to my doc again?  I swear she is going to start hanging up on me.  LOL If you don’t laugh you’ll cry right?!  But yeah, having a lot of numbness, tingling only left side.  The weird thing is my tongue gets numb and my muscles of mastication become stiff and it is hard to eat when I don’t feel well.  My BP has been going crazy all weekend.  Really high..seen 170/104 and down to normal when I lay down.  But takes a while.  Another funny thing is I can feel my BP change after I wake up but I’m still in bed.  Any idea as to what is going on Dr Diana?

Excellent advice, Palomino! Yes, it is likely related to cranial nerve compression. I’m writing about that right now in Part 2 of The Driscoll Theory. Was confuses our neuros is that the symptoms are intermittent, and they kind of think if a nerve is damaged, it’s damaged. But, no, I humble believe that our nerves are compressed intermittently, based on our intracranial pressure, position, etc. I’ll have some advice on that in Part 2, but meanwhile, have you had the “Diamox Discussion” with your doctor? What a huge help that was for us!
smile Diana

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 21 February 2012 10:34 PM   [ Ignore ]   [ # 3 ]  
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Dr Diana,
What do you think about the information presented at ISNVD 2012 Patient Day on dental therapy, Dental health and vascular healing (David Williams, CANADA). Would this be helpful when the jaw muscles are being tightened by the cranial nerves?

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Posted: 18 March 2012 09:50 PM   [ Ignore ]   [ # 4 ]  
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I find this very interesting. My tongue goes numb and so do my arms and its hard to swallow. I was told I had damage to the 7th cranial nerve in my brain. Also, my left pupil gets much bigger than my right at times.  The neurologist said he didn’t know what was causing my tongue to go numb. I have numbness in my face too at times and my lower left eye lid will pull down or droop, just the bottom eyelid….I can really relate to this post. I have systemic mastocytosis, dysautonimia, diastolic dysfunction heart failure, and had Ramsey Hunt syndrome about 7 yrs ago.

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Posted: 07 April 2013 09:52 AM   [ Ignore ]   [ # 5 ]  
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hi i just found you guys yesterday and am not real sure what to do next. would like to put my problems out there but don’t know where to start. thanks

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Posted: 09 April 2013 08:36 PM   [ Ignore ]   [ # 6 ]  
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dab78 - 07 April 2013 09:52 AM

hi i just found you guys yesterday and am not real sure what to do next. would like to put my problems out there but don’t know where to start. thanks

Hi Dab78,
A good starting point is to search in the box above for your particular diagnosis, or symptom, then you can add to that particular forum, or find out more about the symptom, or learn how others have dealt with it. This website has an great variety of other people’s experiences and various treatments they’ve tried, or ways to ‘better manage’ their conditions, which we all contribute to over time, forming an amazing resource for sufferers, medics and scientists alike. Welcome aboard.
Regards
Barbara
(UK)

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