Extremely confused and new to all of this.

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ccarl0401
New Member


Date Joined Jun 2010
Total Posts : 2
   Posted 6/14/2010 7:42 PM (GMT -6)   
Hi, I am new to this forum and new to Multiple Sclerosis. I am clinically diagnosed with Multiple Sclerosis per my neurologist as of last week. She said she was certain that I have MS based off of my history which is quite lengthy and from the neuro exam. She said I have Classic MS signs. She even went as far as to give me literature for Rebif and instructed me to educate myself as much as possible about Multiple Sclerosis. She said normally she does not give a diagnosis so freely but, in my case she is positive that the diagnosis fits.
 
However, here is the trouble, she went ahead and sent me for a MRI of the brain and c-spine which I had on Saturday, with and w/o contrast. Today, I awoke with severe weakness in my legs and felt horrible so I called the doctors office to see if they received my results and if we can possibly start treatment. I have been sick since January and been experiencing what I learned to be symptoms for many years. Also, I just had a bladder surgery in February and my symptoms progressed rapidly since then. Well, when I called the receptionist said she would check with the doc and call me back. She called at the end of the day and told me my brain scan was normal and that the doctor will discuss my c-spine results with me on my next visit. I asked her if this means I don't have multiple sclerosis and she said not in my brain. What does that mean?
 
She didn't share more with me and I have to wait until Friday for the rest of the results. I don't get it. I have the films and they are hard to interpret of course because I am not a neurologist or radiologist.
 
However, I have every symptom and have had the hug thing for 6 years, what else would cause this?
 
Mind you, I never suspected MS before I met with the neurologist, I was just going to the next specialist in my journey because no one seems to have a clue what is wrong with me.
 
Could I still have MS with these findings or have I ran into another road block. Seriously, this journey is draining me physically, emotionally, and financially.
 
Any insight or advice would be greatly appreciated.

apeter
New Member


Date Joined May 2010
Total Posts : 12
   Posted 6/14/2010 8:22 PM (GMT -6)   
boy oh boy! How stressful! Your story sounds kinda similar to mine. I went to a neurologist last year with so called "classic" MS signs and he said he would send me for an MRI, but he was almost positive it was MS. Then when the scans came back clean, he wrote me off. After reading more about MS I learned that a neurologist can't make a diagnosis based on symptoms alone in an initial meeting so I ended up getting a second (and third) opinion. My advice: see an MS specialist who will have seen a lot of it and is experienced in diagnosing (and ruling out) MS.

And don't stop until you find at least one doc that you trust is listening to you. He/she might not be able to give you a diagnosis right now, but you will have someone who doesn't think you're crazy and really cares about keeping up with your health. I know that it can get expensive, but you can't put a price tag on your health and in that I include your daily physical/emotional general well being which will be greatly improved if you have a doctor you trust to advise you and answer your questions.

ccarl0401
New Member


Date Joined Jun 2010
Total Posts : 2
   Posted 6/14/2010 9:22 PM (GMT -6)   
Thank you so much for your reply.
 
I might want to clarify that this particular Neurologist is a specialist in Multiple Sclerosis which is why she was so confidant. It was her observation, I never suspected MS, actually I was more concerned with my multiple arthritis issues and a pain specialist referred me to her with the suspected MS diagnosis but did not share that with me. I thought I was going to the neuro for migraines. I had really banked on my symptoms being Rheumatoid Arthritis. However, that has been ruled out.
 
about 6 yrs ago, I started having the chest spasms, as I call them. They scare the crap out of me, I told many doctors about them but, no one seemed to understand them or have any suggestions. I just lived with them. I have had many episodes with losing balance, numbness in my face and back of the head, dropping things constantly, urinary issues that I just had surgery for in February, my attention and memory became so bad that I went to a doctor and was put on ADHD meds a year ago, to no avail.
 
Needless to say, I did not do well with my neuro exam although I didn't understand what she was testing. I fell down when I walked the drunk walk thing. Then she told me to take my time and get dressed and see her in the office. That is when she said she thought I had MS, then she said she is certain although she needed the MRI. But, regardless of the results of the MRI, she said I was clinically definant for multiple sclerosis.
 
I just don't understand why the receptionist read my brain mri results but, would not share the c-spine results with me. Since I am new to all this, I guess my question is can I have MS lesions on the spine and not the brain? I
 don't fully understand how all this works, and needless to say, I am still a little rattled with the whole diagnosis to begin with.
 
I am sorry if I didn't make sense before....seems the story of my life as of lately.

apeter
New Member


Date Joined May 2010
Total Posts : 12
   Posted 6/14/2010 10:34 PM (GMT -6)   
aha! Sorry for the confusion. I guess I would try and get in touch with the doctor. I know that it is always a couple days before my neuro calls me back, a couple of really nervous days... I do not have an MS diagnosis so I am not the one to ask about lesion locations and what they indicate. I would just try and hang in there until you next get to speak with or see your doctor. I really was sitting in your exact same chair almost one year ago to the day. Worried and waiting for imaging results, talking to receptionists only to hang up more frustrated and worried than before, not knowing what it all means.

Stick around and see if you can get advice from others with more experience here on the boards. Until then, call a friend, watch a movie, or make a cup of tea and head to bed, just try and distract yourself. Remember that there is little you can do about it all just this second, with news like this it will be a while before you are used to the idea and have a plan.

And no matter what the test results or what the doctor says, I stand by what I said before, don't stop until you are confident with your doctor's competence and that he/she is there to fight for you. The boards are a great place to get feed back on what your doc says, what your test results mean, and whether or not you should seek a second opinion. It may just take a couple days before the person with the right knowledge and experience replies to your post.

Sorry I can't been more helpful!
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