stephthepeach
03-06-2008, 04:46 PM
Hey everyone, just wanted to get some advice from someone/anyone who is more "seasoned" than me with all this. I have not been diagnosed with MS and I certainly don't want to sound like I'm in terrible shape-b/c I'm not. I'm also not a hypochondriac but I'm pretty conviced that I could have MS.
Beginning in 2001, I had what I will describe as "weird sensations" in my head and in the area of my forehead-dizzy (but no vertigo), my lips would get tingly and I would just feel strange-like I wasn't really there or something (i know it sounds crazy, I can't explain it). Different doctors told me different things, it was an anxiety attack (but i wasn't anxious), high blood pressure, w/drawal from some of my meds (which at the time was Paxil). I associated all of this to Paxil and whenever I would have these wierd sensations, I would assume it was b/c i had gone too long w/out my medication (i tried to take it everymorning like clockwork). I have been off Paxil for at least three years now, but I still sometimes get those really wierd feelings in my head/forehead (but not as bad as in 2001). Also, crazy things happen, like forgetting someone's name that I've been close to for years, (and I don't mean forgetting just for a split-second)...I mean really forgetting, like having to walk away b/c I forgot my friend's name and no matter how hard I searched my brain, I couldn't think of it. Other stuff too. Like I'll forget forget my phone number (that I've had since the 90's) and have to give otehrs a different phone number b/c I can't remember my own. People at work, constantly say things to me about being a "ditz" and we laugh them off. Yesterday in the middle of a presentation, I stopped mid-sentence and couldn't remember what I just been talking about. When I spoke to doctors about this, they told me it was stress (could be). Last week, these "weird sensations" returned but as powerful as they were in '01. I was worried driving home-nothing was spinning but I didn't feel "right". I work in a school and I was walking from one side of the classroom to the other and I could not walk straight-I felt myself walking to the side. I feel like someone is holding my left eye-ball in the palm of their hand. It doesn't hurt but it feels weird (there's that word again). Also every night, by feet but mostly my hands get tingly up to just past my elbows. It feels like someone has their fingers wrapped around my upper arms (where the tingles stop), more on my right arm then my left. I constantly move my arms/hands around but I can't get that feeling to go away. I'm not in pain, but I can't explain to anyone what is going on. After I almost fell last week, I went to the doctor-she said if she was to bet, she would guess it was my medications, but if it was my meds, she thought "it is very rare". She referred me to a neurologist, but I can't get in until 4/2.
Also, I'm ALWAYS tired (but who isn't)? I go to bed at 9:00 on weekends (I work fulltime) and then HAVE to take a three hour nap during the day. I feel guilty b/c I'm always in need of a nap, I plan my days around sleep. Also, my eyes (the eye-balls themselves) do those jerky movements from side-to-side, really, really fast...
100 things are running through my head...do I have carpal tunnel? do i have adverse reactions to medications (that others don't typically have)? sleep apnea, i also drink a lot of diet cokes-so could the aspartame be causing this? or do i feel "like everyone else"? I can't talk to anyone about this b/c I feel like they will think I'm nutso and/or I'm a hypochondriac (and maybe I am).
I apologize for making my petty complaints sound like a big-deal (and I know they are petty after hearing what MS sufferers go through), but I'm scared.
Does anyone know what I can expect when I see the neurologist? I am terrified of doctors (especially needles)...but I've had two babies so I can handle it.
Thank you so much for your help...and bless all of you.
-Stephanie
Beginning in 2001, I had what I will describe as "weird sensations" in my head and in the area of my forehead-dizzy (but no vertigo), my lips would get tingly and I would just feel strange-like I wasn't really there or something (i know it sounds crazy, I can't explain it). Different doctors told me different things, it was an anxiety attack (but i wasn't anxious), high blood pressure, w/drawal from some of my meds (which at the time was Paxil). I associated all of this to Paxil and whenever I would have these wierd sensations, I would assume it was b/c i had gone too long w/out my medication (i tried to take it everymorning like clockwork). I have been off Paxil for at least three years now, but I still sometimes get those really wierd feelings in my head/forehead (but not as bad as in 2001). Also, crazy things happen, like forgetting someone's name that I've been close to for years, (and I don't mean forgetting just for a split-second)...I mean really forgetting, like having to walk away b/c I forgot my friend's name and no matter how hard I searched my brain, I couldn't think of it. Other stuff too. Like I'll forget forget my phone number (that I've had since the 90's) and have to give otehrs a different phone number b/c I can't remember my own. People at work, constantly say things to me about being a "ditz" and we laugh them off. Yesterday in the middle of a presentation, I stopped mid-sentence and couldn't remember what I just been talking about. When I spoke to doctors about this, they told me it was stress (could be). Last week, these "weird sensations" returned but as powerful as they were in '01. I was worried driving home-nothing was spinning but I didn't feel "right". I work in a school and I was walking from one side of the classroom to the other and I could not walk straight-I felt myself walking to the side. I feel like someone is holding my left eye-ball in the palm of their hand. It doesn't hurt but it feels weird (there's that word again). Also every night, by feet but mostly my hands get tingly up to just past my elbows. It feels like someone has their fingers wrapped around my upper arms (where the tingles stop), more on my right arm then my left. I constantly move my arms/hands around but I can't get that feeling to go away. I'm not in pain, but I can't explain to anyone what is going on. After I almost fell last week, I went to the doctor-she said if she was to bet, she would guess it was my medications, but if it was my meds, she thought "it is very rare". She referred me to a neurologist, but I can't get in until 4/2.
Also, I'm ALWAYS tired (but who isn't)? I go to bed at 9:00 on weekends (I work fulltime) and then HAVE to take a three hour nap during the day. I feel guilty b/c I'm always in need of a nap, I plan my days around sleep. Also, my eyes (the eye-balls themselves) do those jerky movements from side-to-side, really, really fast...
100 things are running through my head...do I have carpal tunnel? do i have adverse reactions to medications (that others don't typically have)? sleep apnea, i also drink a lot of diet cokes-so could the aspartame be causing this? or do i feel "like everyone else"? I can't talk to anyone about this b/c I feel like they will think I'm nutso and/or I'm a hypochondriac (and maybe I am).
I apologize for making my petty complaints sound like a big-deal (and I know they are petty after hearing what MS sufferers go through), but I'm scared.
Does anyone know what I can expect when I see the neurologist? I am terrified of doctors (especially needles)...but I've had two babies so I can handle it.
Thank you so much for your help...and bless all of you.
-Stephanie
Sponsor
zadie
03-06-2008, 06:55 PM
Hi stephanie
I can relate to the weird sensations in the forhead this also happened to me and the tingling lips I felt really strange but could not actually explain it the wierd feeling but I knew I was not well,.Doctor thought I was mad ,stress was I having anxiety attacks which I did end up having. I felt like nobody understood but I knew there was something wrong. From believing that doctors actully knew alot to knowing they dont .Have you found a neuro if so he will look at your history do a physical exam then blood work if you have had kids I am sure you are ok with blood work then proably an MRI.
Good Luck
Michele
I can relate to the weird sensations in the forhead this also happened to me and the tingling lips I felt really strange but could not actually explain it the wierd feeling but I knew I was not well,.Doctor thought I was mad ,stress was I having anxiety attacks which I did end up having. I felt like nobody understood but I knew there was something wrong. From believing that doctors actully knew alot to knowing they dont .Have you found a neuro if so he will look at your history do a physical exam then blood work if you have had kids I am sure you are ok with blood work then proably an MRI.
Good Luck
Michele
stephthepeach
03-06-2008, 09:41 PM
Thanks for your reply. I've NEVER been able to explain the feeling to anyone. Did you ever have to have a spinal tap done to help with the diagnosis?
I think even if I get a diagnosis of MS...that I'll feel some relief...that I finally have an answer.
Of course, I know that that could take months or even years...I'm kicking myself for not being more persistant with all this.
I think even if I get a diagnosis of MS...that I'll feel some relief...that I finally have an answer.
Of course, I know that that could take months or even years...I'm kicking myself for not being more persistant with all this.
MSJayhawk
03-06-2008, 10:47 PM
Start with a good neurologist and take the battery of tests that are given to you. A LP will allow a diagnosis, except in the case of 15% of MS patients. No one test will allow for a diagnosis. It is the elimination of things it is not. Afterwards, when things are eliminated, MS is usually the last diagnosis.
MS has been my shadow for 25 years. Once you have your diagnosis, the stress gets better. MS is only an ogre if you make it an ogre. Do not magnify MS and MS will only become an occasional pain.
Good luck in your search for an answer. Meanwhile, come here often and get better informed, vent if needed, and enjoy the conmraderie of MS people. Life is not over with MS. Seek your blessings because there are plenty.
MS has been my shadow for 25 years. Once you have your diagnosis, the stress gets better. MS is only an ogre if you make it an ogre. Do not magnify MS and MS will only become an occasional pain.
Good luck in your search for an answer. Meanwhile, come here often and get better informed, vent if needed, and enjoy the conmraderie of MS people. Life is not over with MS. Seek your blessings because there are plenty.