Jane and Sandy: Thanks for your feedback.
Jane Thomas: would the cerebellum degeneration show up on an MRI or how was it diagnosed? I have never heard of it before and will have to do some research on the net.
Sandy: My PCP doesn't seem to think my problems are thyroid related...my TSH was normal, heck, ALL my bloodwork was normal and the MRI was normal and he just says don't worry about it! The episodes have been a little less frequent recently, so at least that is a blessing! But we sure do seem to have some of the same symptoms! Is there a separate test for calcium deficiency? I must confess I do not drink much milk, or take any supplements.
I had a Thyroidectomy in Oct. with parathyroid damage - was readmitted for 3 days to get calcium level up.
The worst of the hypocalcemic symptoms were numbness and tingling. I had "right sided" symptoms - right half paralysis of mouth - numbness/tingling in right hand, foot, leg....
Anyway, just making a connection to the thyroid surgery and numbness. Could be calcium related.
Sandy
I have been diagnosed with cerebellum degeneration and was experiencing burning pain starting in one place at a time and ending all over. Now it seems to have turned into numbness all over and is in my head down to my chest real bad and then in my left leg. I don't know what's happening and it's really scary. MS was ruled out about 6 years ago but maybe that's what it is. Thank God for walking with me every step of the way.
Just wanted to let you all know...got a call from my doc's nurse just now. She said the MRI was normal: "no significant abnomalities." Still have some symptoms, but at least that rules out some really bad possibilities! Go back Tuesday, don't know where we'll go from here.
I am 29 years old - female - relatively healthy (60 pounds overweight - 5' 11") I have just begun this numbing process. A month ago I had a local anesthetic to remove an angioma protruding from my skin. I was given a double dose of anesthetic because it wasn't fully taking. A few days later I began getting a numbing sensation on my back - directly behind where the surgery was. It continued at least once a day for a few minutes. A few days ago The numbing spead up my back, up my neck, and became a helmet over my head. I was holding my baby at the time & couldn't think to put him down. I could speak. My vision dimmed. It lasted about a minute - burning & pressure. When that was done the right side of my face & neck stayed numb for hours. Now I am always numb at some part of my upper body. I went to the doctor yesterday. He had no clue & claimed that I was coming down with a viral infection - I do have a 100 degree fever. I am scared & don't know what to do.
Thanks for listening. If any one has an answer please post it.
Dear Sarah,
I can only imagine how scary this is for you. I don't have any answers -- I have just begun this journey myself, but I encourage you to post this question to the physicians at this website, as well on the forum (as you have already done.) I can't believe that your doctor just shrugged this off...perhaps you should look for a neurologist as close to home as possible.
Keep us posted. We are all in this together and know how it feels to have weird things going on with our bodies!
I will definitely post my results and keep you updated. Looking at the list of tests you have undergone with no clear results does not give me great hopes for the future...but, then again, it is better than some other options!!! (MS, brain tumor)
Thanks for the smile. I will think of "the tough get going" when I'm in there Monday. Wanted to tell you why I did not email directly...my daughter, the computer whiz in our family, often checks all our email, and I have not discussed any of this with my children (no need to make them worry at this point) so for now, just keep checking the forum.
Hi Renee,
Please please keep us posted! I get the facial numbness, both sides especially when tired. I also get shin numbness in one leg, it goes hand in hand with the face numbness, they come on together and seem to leave together, I get twitching, slight weak feeling in leg but like you can still feel all the stimuli. Im willing to bet your MRI will be normal. If you've had a pos ANA test i'd think your leaning more towards a connective tissue disease? We have alot in common here! ***@**** feel free to email! Good luck to you
Hi Renee,
Promise me you will post your results when you know them!
I've had a brain MRI, blook work, evoked potentials of the extremities and eyes, complete eye exam, neuro exam all normal. Yet things are not going away. They seem to frequent for MS as they come and go every few days for the past year. Im not getting worse but I am getting more frequencies. So im miffed as are the Drs. I just dont know what to think anymore. Best of luck to you. I'll be thinking of you.
The funny thing I remember about my brain MRI, they let you listen to the radio, and that song "when the going get tough" the tough get going.. I forget who sings it.. came on! anyhow had to make me feel alittle better!
Dear Anon:
Thanks for your support! I certainly hope you are right about that MRI! It is scheduled for Monday afternoon. I'll let you know. What tests and results have you had?
Reading your comments is like reading my own mind...especially the fear of MS. I recently started having periods of facial numbness that would come and go. I can still talk, and feel external stimuli; only I know that it is happening. Now this is happening more often and lasting longer, and has moved from just the right side of my face to the left. I have also experienced some weakness in my arms, particularly on the left side. yesterday, I visited my PCP. I could tell he was concerned when my left leg did not reflexively kick. He is sending me for an MRI to check for MS...how can two little letters be so scary? I have been flirting with a diagnosis of possibly lupus or at least fibromyalgia for about five years (have had several mildly positive ANA's, fatigue and joint pain) but no one is able to say if this is related to that or not. Any ideas what is going on would be appreciated.
Hi Pam
Your not alone, im yet another suffering person from this mysterious stuff.
Now I do have one question for you. the jiggly eyes.. this is called Nystigmus <- forgive my spelling may be incorrect, but its a shaking of the eyes and its from weak eye muscles from a neurological problem. What has your Dr said about this? I do know that is a sign of MS not to scare you and Im not trying to.. im terrified of MS also! I go numb here and there for days.. today is a good day, who knows what tomorrow will bring. But I just wanted to let you know what I do know about eyes and MS and have you mention this next time you see your doc. Good luck to you!
p.s. if you have a friend or spouse look at your eyes and look slowly from side to side or follow their finger, do they see the shaking?
Have you tried what is call a DMX aka Dynamic Motion X-ray?? It is the newest in seeing the insides and finding what is going on. YOu are moving your neck, head, orwhatever it maybe instead of lying down in a still position like a MRI. CHeck out this website www.nu-best.com and see for yourself. Let me knowwhat youthink. I just had this done and it is truly amazing
Mary Annie
Alaska
Kim,
I also have been reading this site now since last Oct. I am 46 and healthy (never was hospitalized or had any surgeries )until last Sept., when driving home from work I experienced a "wave of tingling" that came over me and when it stopped the whole left side of my face was numb. Saw my primary the next day who took an EKG (normal), she suggested I see a cardioligist. A few hours later another "wave" came over me and my fingers in my left hand went numb and left leg felt weak. Went to the ER and was admitted for possible TIA. CT, Chest X-ray, Carotid Dopplers, Stress test, blood work all normal. Discharged 2 days later directions to follow-up w/ neouroligist. The neuro I saw did short exam, said he didn't know what happened to me and said to call him if it happened again. PCP said the same.
Changed PCP. The following week same "wave" happened again w/left face becoming numb. New PCP ordered MRI/MRA (normal). Just about a month after 1st episode this happened again (while I was out of town) but right side of face became numb as did right side of my throat. Went to ER. CT (normal). Dr. suggested a followup w/ neuro and suggested it may be MS. Saw new new neuro who also suggested it may be MS, ordered LP, EEG, Evoked Potentials, MRI C-spine all normal. Between the 2nd ER visit and now I also have numbness in my left toes and intense cramping in the back of my right leg while I am just standing or sitting. For just about 2 weeks in Dec. everything backed off except a small numb spot on my left cheek and the toes. Last week the left side of my face went numb again and still is numb. My neuro and I agreed to a 3 month wait unless more new symptoms occur or more return, then he'll send me and my normal test results to another neuro for their opinion.
I have also been experiencing pain behind my left eye since Oct. w/ blurred vision and "jiggly eyes", making reading very diffucult. It's very hard to focus on words without my eyes jumping off the sentence. Saw an opthomoligist and had eye exam (Mon.) and Visual Field Test (normal) today. He is referring me to a neuro-opthomoligist w/an appt. next Wed.
I apoligize for the length but finally felt the need to share and let you know there is another person with these "mystery symptoms". I never was a stressed type of person before but this not knowing is pushing it.
Pam
You said your TSH was 43??. What it is now, and I assume you must be on some medication for it? If your TSH was at 43, you were extremely hypothyroid. This can cause a host of symptoms, although not all you have mentioned. I would check your latest lab numbers just to make sure your in the normal range.
I forgot to mention that I am a 33yr. old female with no other past medical problems. In good health otherwise (thanks to all those tests.:)) I exercise regularly, constantly on the go. Also one of my endo's tried me on neurotin (sp?) and it made the numbness worse. Do you have any idea why? So I stopped. Thank you very much for all your help you give to people.
Dear Kim:
Sorry that you are having problems. I am not sure I can help much. I am not sure what you mean by inflammation, do you mean lymphocytes or polys? What were the numbers? Was the spinal tap really clean or was it a bloody tap? You might have just had a chemical or sterile meningitis as a reaction from the surgery. Bright spots on MRI can be a number of things. The posterior limb however, would be motor function not sensory findings. Steriod can have a number of effects, which one was the real effect in your case I can't tell without more information. Multiple bright spots might indicate the small vessel disease which might have precipitated your hemisensory changes. But, again without seeing the films I can't tell. Sorry that I am not much help.
Sincerely,
CCF Neuro MD