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

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

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

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.

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.   I hope you are feeling better.