Gemini26 said....Please Give Me Some Direction....

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rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/5/2008 8:32 PM (GMT -7)   
Gemini26 said...

I have gone to a Neurologist and he said everything was fine. I told him about the numbness in my hands, fingers, feet and toes. I told him about my dizziness, off balance stuff, like walking into walls, doors, cubicles, you name. Constantly tripping and banging into things (I am so bruised). I had an EMG study on my hands and he said there was something definitely wrong with my Central Nervous System (this was after the Neurologist). Since then, my left leg has been going totally numb. The headaches are horrible, my swallowing problems (dysphagia) are getting worse. I also feel like I am going to pass out in the shower if it is too hot. Recently my vision has been getting blurry and I have had excruciating shooting pains in my right eye. One other thing, my lower back all the way down my legs get this very heavy feeling. I haven't had a spinal tap or anything major to diagnose MS except for the things they do in an office visit. I CANNOT TAKE ANYMORE. I also suffer from Fibromyalgia, Diffuse Esophageal Spasms (extremely rare)..imagine your most worst muscle spasm ever and that's what I get in my esophagus. I'm to the point where I actually want my doctor to remove the whole esophagus. I just had Botox injections AGAIN and AGAIN they didn't relieve a thing. I have had so many tests just for the spasms that I wasn't noticing all the other symptoms. I am in Surgical Menopause, have and underactive Thyroid or and had to have my Thymus Gland removed due to a tumor. I also have Raynaud's Phenomenon and Carpal Tunnel in both wrists. Also, I have really quick fainting spells where I am walking one minute and on the ground the next. I don't remember these. PLEASE, SOMEONE GIVE ME DIRECTION. I live in Pennsylvania. If anyone knows of a really good Neurologist, please let me know. I AM DESPERATE!!!! I feel so alone and I don't know if I can take anymore. SOMEONE PLEASE HELP ME!

Just a footnote, I have no one that even remotely tries to understand what I am going through, which includes a husband and three teenage sons.


Phyllis


rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*

Post Edited (rhondab) : 9/5/2008 9:38:57 PM (GMT-6)


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/5/2008 8:38 PM (GMT -7)   
Hey Phyllis

I started this new thread so ur post would get more attention. I"m so sorry for what u'r going thru. My goodness, what a huge load u'r under! I'm also so sorry for the lack of support u'r experiencing.

I'm not sure i can tell u anything that will help, but i wanted u to know i see u and am glad u'r here. I will do some research on the things u'r experiencing and hopefully have some information for u tomorrow. Hang in there friend and know that we are glad u'r here and hope u'll feel comfortable posting and asking any questions u may have. This is a wonderful community and u'll see that the people here will do all they can to be here for u. Take care and try to feel better.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Jenny R.
Regular Member


Date Joined Sep 2006
Total Posts : 162
   Posted 9/5/2008 9:39 PM (GMT -7)   

Hi Phyllis,

What part of Pa are you from?  There is a very good neuro in Pittsburgh, Pa.  Her name is Susan Basser, she practices out of Allegheny General.  She also has offices that are located in different areas in the suburbs.  My gram went to her for her MS.  She also specializes in Parkinsons/movement disorders.  Its so hard when you know your own body and you know that something is definenty wrong.  Been there, done that.  I hope you get some answers soon.

 

Take care, Jennifer smilewinkgrin


Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted 9/6/2008 5:25 AM (GMT -7)   

Hi, Wow hon, you are in my prayers. Another thing I would do if I were you would be to contact the National MS Society in your State. They can give you names of Neuro Docs in your area that specialize in MS ( if thats what might be going on in your case). I recently contacted them and a woman called me back in 2 days. She was so nice. She talked to me about an hour and we talked about all kinds of things and she even mentioned there is phone line support.

You will find everyone in this forum is so very nice and supportive. I have gotten such good advise that I am researching since recently being diagnosed.

Don't give up, we are here for you. Even if what you have is not MS, we care. Hang in there. Both of our moderators really helped me with tons of advise, as well as others who log into here. It is hard for others to understand how we feel when we don't understand ourselves. Blessings to you and hugs~Katie


What you put into the lives of others comes back into your own ; The will of God will never take you where the Grace of God will not protecxt you!
                              Hugs~Katie
                  Diagnosed ~ August 2008


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 9/6/2008 7:39 AM (GMT -7)   

Hey Phyllis,

Wow you have a lot on your plate.  You have gotten some good advice here.  I am sorry to get on this thread so late.  I would definitely get a second opinion from an MS specialist/neurologist.  You need to get some testing.  You mentioned that you have only had exams but no tests.  I would push hard for those.  Most of us have had a brain MRI, some of us go on to also have cervical and thorasic spine MRIs, lumbar puncture and evoked potentials, you will need blood work with your lumbar puncture and then there is the very thorough neuro exam.  You will get a lot more answers from these tests than a doctor just looking at you and saying you are fine (sheeeesh can you tell that made me mad?? ) 

You have our support here - we can all relate to what you are going through. MS is one of those diseases that has caused many of us to go through the whole doctor looking at us like we are hypochondriacs.  Good luck and let us know how you are doing in your quest for answers.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 9/8/2008 6:50 AM (GMT -7)   
Monday a.m.
 
Dear Phyliss:
 
I suppose this is another example of why they call it the PRACTICE of  medicine.
 
May I suggest you contact your state MS society office for a refferal to a MS specialist neuro...
 
Great luck.  
 
John
DX'ed June 21st, 1987
 


20yearsandcounting
Regular Member


Date Joined Jun 2008
Total Posts : 100
   Posted 9/8/2008 1:02 PM (GMT -7)   

Hi there girl....are you Gemini? or is Gemini6 someone different.  Ok, I am in Juniata County in Central Pennsylvania.  I don't know where you are located but, if you are close to Harrisburg I have a fantastic neurologist.  My visits are not quick and abrupt.  She sits and talks with me like she is a neuro/psyc.  If you want to have someone go in with you for your visit she has no qualms about it.  She listens to you and doesn't pass things off.  Actually one time I fell down the steps and had nasty pain in my thigh.  I went to her for my usual visit  nd just told her about the pain in my leg.  She ask me a bunch of questions and sent me to another Dr. that exact same day and I found out what the pain was.  I have a pinched nerve in my groin.  I found that amazing. shocked   I hope you are feeling better.

 

 


           
           Age is but a Figment of Our Imagination.
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~* 
^^^^^^^^^^
Actually this is Rhonda's on her profile but, I just Love it.
 ^^^^^^^^^^
*Grins and Giggles*
;^)
 
Peg

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