New here...Windburned numbface, burning tongue, tighness around ankles?? what could it be???

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dilynn
New Member


Date Joined Jan 2007
Total Posts : 1
   Posted 1/19/2007 8:27 PM (GMT -6)   
Hi there everyone, short and to the point.  I was checked for MS about 2 years ago. Diagnosis was negative although there were a couple of small lesions.  His comment was either way I would treat your symptoms the same way whether you had it or not.  I really didn't like him...
So the first symptoms started at about age 40 with my tongue burning/ numbness, I also had stated it was lupus, then the anxiety and depression set in.  A circle..Went to rhuematolgist just gave me all kind of pills..I am a nurse an not real compliant.  At some point was given neurotin, I think from my shrink..
 currently I am on Lamictal, neurotin, Xanax  I have been on alot of stuff in between...to many to mention.  These are the only things now..
 
That was the beginning. My symptoms go like this:
Tongue numb and burning
Face feels like it is windburned or dry.  Hard to explaiin.  Peroids of numbness to side of face.
Weakness to left arm and leg on the outer part.  Feels like I am very uncoordiinated at times.  I even was not able to work in dialysis because of the lack of coordination.
My left ankle feels like when your socks or twisted around your ankle.  This is new.  The other stuff still there.
My skin has areas of neuropathy it feels like I have been scratched.  Never no rhyme or reason.
Recently I have devoloped rectal pain, night time is worse wakes me up.
Also I have had some bowel incontinence about 3 episodes.  Thank God I was at home..
Numbness of pinky finger......
Visual Changes...that could be getting old...I am 48...
The Big one..There are days when I feel very spacey.  I am having a hard time spelling when charting..This is a big change..The old brain fart thing...
Devoloped Cardiomyopathy this summer...
 
I am sure there are more....So I guess I am wondering what to do....I am just frustrated. I feel like a
hypochondriac...Am I???  No these are real things..It bothers me that I may be on my med forever.  I can feel these symptoms just when my meds are ready to be taken again...
Thanks for letting me ramble.  If nothing else it gives me a list of things to give the doctor when I go...
Please feel free to add you insights to this and thanks for reading this post..

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/19/2007 9:10 PM (GMT -6)   
Hey Dilynn

I'm so sorry u've been going thru all this for so long too. Sounds like u have many and varied symptoms that may be due to many things. Did u'r neuro tell u what the lesions were from?? How long has it been since u've seen a neuro? Prob a good idea to go see him or another neuro (since it sounds like u'r not too happy with him.) again. Almost all the symptoms u list here are possible ms symptoms, but as i said before, they may also be other things. Do u know what tests were done and what other possibilities were ruled out?

U brought up a good point. When anyone begins to go thru something like this it's a great idea to start a symptoms journal. That's just a simple way of keeping up with u'r symptoms including severity and longevity. This will help a lot when u'r talking to u'r doc and trying to remember what's been going on. I can tell u memory probs will wreak havok on u'r ability to communicate with u'r doc! Also, u may want to get copies of all the tests and results obtained from u'r doc(s). This will be invaluable to u as u either try to compare changes in (for example) u'r mri's or as u move on to other docs if needed.

I'm sorry i can't give u any answers or more help, but depending on how long it's been since u'r last neuro visit (8 yrs?) it'd be best to revisit the neuro and see what new tests reveal and go forward from there. I do hope u begin to get some relief and help with all this. I'm so glad u've found us and hope to get to know u better in time. This is a great group of people who are more than willing to help u wherever and however they can. Please feel free to ask any questions u have. We have live chat on Monday's at 6:00 pm (cst) and i hope u'll join us if u can. It's a great chance to get to know everyone and get some real time answers to u'r questions as well. Best wishes and prayers to u.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


booboobum
Regular Member


Date Joined Jan 2007
Total Posts : 135
   Posted 1/19/2007 9:14 PM (GMT -6)   
dilynn,

I've been in limbo for about 3 years and can certainly relate to your feeling like a hypochondriac. We know that these feelings and sensations are real but to those around us it's hard to empathize because we may not look or act sick. I also get periods and days where i feel spacey and very uncooridanted. sometimes when i type my fingers don't type the letters that i want. all very strange. i forget words in mid=sentence which makes it difficult to have a decent conversation so most times i just keep quiet. I'm 42 now and also thought some of the symptoms were just chalked up to getting older, but I really think it's more than that. Have you been back to the neuro for a 2nd MRI? Since memory is a big issue with me, I have started writing everything down to take to the neuro when I see him. It helps, that is, if I remember to take the notes. LOL

Pam
migraines since 1974; septic hip - 1999 with birth of daughter ; hip replacement 9/2003; MS limbo since 3/2004; dx IBS - 5/2005;dx acid reflux - 11/2006; dx compressed L4-5 and T 7-8 - 5/2006; dx RLS - 9/2006
Clonopin, hydrocodone, Butalbital, prevacid and anything else that helps!


shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 1/19/2007 10:31 PM (GMT -6)   
Welcome Dilynn,
It sounds like it could be lupus related.?  With the cardiac involvement it should be checked. MS does not cause that.
 
Have you had a repeat mri lately?  You probably need to address that.  Go to a reputable neuro and see what they say.  Be sure to keep in contact with your rheumy too. 
 
Hang in there and let us know how it all goes.  Take care. :-)
Michelle ><>
Co-Moderator MS forum
 
Happiness is not a destination but a day-to-day journey..


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/20/2007 5:47 AM (GMT -6)   
dilynn said...
Hi there everyone, short and to the point.  I was checked for MS about 2 years ago. Diagnosis was negative although there were a couple of small lesions.  His comment was either way I would treat your symptoms the same way whether you had it or not.  I really didn't like him...
So the first symptoms started at about age 40 with my tongue burning/ numbness, I also had stated it was lupus, then the anxiety and depression set in.  A circle..Went to rhuematolgist just gave me all kind of pills..I am a nurse an not real compliant.  At some point was given neurotin, I think from my shrink..
 currently I am on Lamictal, neurotin, Xanax  I have been on alot of stuff in between...to many to mention.  These are the only things now..
 
That was the beginning. My symptoms go like this:
Tongue numb and burning
Face feels like it is windburned or dry.  Hard to explaiin.  Peroids of numbness to side of face.
Weakness to left arm and leg on the outer part.  Feels like I am very uncoordiinated at times.  I even was not able to work in dialysis because of the lack of coordination.
My left ankle feels like when your socks or twisted around your ankle.  This is new.  The other stuff still there.
My skin has areas of neuropathy it feels like I have been scratched.  Never no rhyme or reason.
Recently I have devoloped rectal pain, night time is worse wakes me up.
Also I have had some bowel incontinence about 3 episodes.  Thank God I was at home..
Numbness of pinky finger......
Visual Changes...that could be getting old...I am 48...
The Big one..There are days when I feel very spacey.  I am having a hard time spelling when charting..This is a big change..The old brain fart thing...
Devoloped Cardiomyopathy this summer...
 
I am sure there are more....So I guess I am wondering what to do....I am just frustrated. I feel like a
hypochondriac...Am I???  No these are real things..It bothers me that I may be on my med forever.  I can feel these symptoms just when my meds are ready to be taken again...
Thanks for letting me ramble.  If nothing else it gives me a list of things to give the doctor when I go...
Please feel free to add you insights to this and thanks for reading this post..
Several things, not necessarily in any order of importance:
 
A lot of your symptoms sound more like lupus -- or some related rheumatological problem -- than MS.  From the "outside", many of these disorders look alike to the patient, and share similar symptoms.  Seems like you should be following up with a rheumatologist, though, particularly with the cardiomyopathy issues.
 
You're 48.  You could be well into menopause, which also can cause many of the symptoms you describe -- the flushed and burning face, cognitive problems, even bowel and bladder issues, all can occur with changing hormones and menopause.  And certainly vision problems.
 
You're a nurse. You should know better than we (who are not medical people) that there are all kinds of disorders that cause people to be prescribed medications that they do need to take regularly, compliantly, consistently, if they wish to be better. And sometimes they have to take those medicines for a long time, even "forever". Doesn't mean they're a hypochondriac. But it does mean they have a chronic illness.  You might.
 
Your symptoms don't sound a lot like MS. You do need to follow up, though, particularly with the cardiomyopathy, and do what your doctor recommends.  You are a nurse. You don't like your current doctor, ask your colleagues, find a different one, and pursue this.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

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