Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 I have mentioned before that I started my quest that lead to a diagnosis of CMT because of a > 2 year problem with numbness and burning pain starting at the tip of my tongue on the left that gradually goes to my entire left face, eye, ear and inside my throat at its worst. It waxes and wanes and has been met with puzzled looks from every neurologist and my family doc. It came on suddenly one day and inspired a trip to the ER with a rush to the CT scanner with negative results. Several months later I had abdominal surgery and woke up with profound numbness of my lips on the right side this time. That prompted a boat load of blood work and an MRI. All negative, resolved in about 4 days. I have just lived with this until I had a blockage of my salivary duct on the left causing swelling, etc. I thought " finally something has declared itself " . Well no one thought much of that but it did lead to a nerve conduction study and then genetic testing positive for CMT. About 2 weeks ago the face thing really flared big time. I felt like someone has split my face in two with a steel plate right through the tongue and sinuses. I went back to the ER. No help. Lots of shrugs and " I don't knows " . About 1 week ago I started getting stabbing pains in my ear along with painful swallowing on the left, like when you are comming down with a cold, but only one sided. That got better but then in the shower I noticed the left side of my scalp feels bruised. Throughout that day my scalp, left posterior neck and upper shoulder felt like a bad sunburn. I kept expecting to feel a bumpy rash but in the mirror, totally normal. This has gradually progressed to a very tender (to the touch -- like a bad bruise) spot at the base of my skull on the left and prickly pain like my hair is being constantly pulled from that spot in an arc over my ear that at times feels like it goes all the way down onto the forehead. The back of the neck still feels sunburnt. I asked my husband to look at my scalp and he sees a rash. Last night it hurt too bad to sleep. I can't put my left side of my head on the pillow. I got up at 3 this morning and took Excedrine Migraine (I don't have anything stronger) and sat up. It brought the pain from about 8/10 to about 4/10 but within a couple of hours it is back to the same and too soon to take more. The worse the pain is the more my face pain is exacerbated. My question (and thank you if you've read this far) is: could this be shingles? Are there any connections between shingles and CMT? Does anyone have any ideas on the 2+ years of face pain and numbness? I can't believe shingles would explain that, it should run its course within 5 weeks at most. I am also healthy otherwise and only 44 so even shingles is a stretch. Thanks in advance for any suggestions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2007 Report Share Posted December 1, 2007 Hi Holli, Has anyone mentioned an Acoustic Neuroma? Just a thought, or guess really, from what you describe in your post. If it is Shingles/or Postherpetic Neuralgia I would think some of the anti-viral medications would help. Advice? Sure, get in the face of the BEST Neurologist and don't leave until you've got answers. And just throwing this out to you, could this be stress-induced, or some sort of Migraine-related 'explosions'? This sounds awful, whatever it is. I know Migraine pain and that alone has sent me crawling to bed for a few days. I hope you can get some answers soon and start feeling better. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2007 Report Share Posted December 1, 2007 Have you shown your Dr the rash? Usually my Dr's interests perk up if there is something visible like a rash. not to get off topic on this either but I want to make sure everyone is aware of MRSA. otherwise known as resistant staph infection. Its not uncommon but I had no idea what it looked like until my son and husband contracted it. It resembles spider bites and impetigo. We just happened to be at someone's house that had lots of spiders and nearly discounted it until I saw the pus (sorry for being gross) but I had never seen so much in my life and once upon a time ago I did study nursing,what a mess it was and it takes forever to clear! It doesn't sound like this is what you have but I wanted to mention it. Memphis keeps telling its residents we don't have a problem when its actually just under reported. Anyway I don't know if I helped any! I hope you do feel better though!!! Lenore in Memphis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2007 Report Share Posted December 1, 2007 Hello. I may be totally going out on a limb here, but were you ever tested for Lyme disease? A lot of your symptoms are similar to those of lyme. Especially the face numbness and the rash. What did the rash look like? I may be totally off here but just thought that I would put in my two cents. I too have chronic lyme along with CMT. Just a thought. Look up Bells Palsy. Teri Quote Link to comment Share on other sites More sharing options...
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