Allow me to introduce myself.

      hi gretchen,  its been a few years since posting here.  i have been dealing with advanced liver disease from hepatitis c and have been active on the hep forum.  well, after 20 years, i have cleared that nasty virus.  which brings my focus back to MS. 

     I am ppms, thus my screen name, ppmguy.  my neurologist of the past 18 years retired a few weeks ago. so i am waiting for an appt with a MS specialist, which is now being offered by Kaiser. i am ready to tackle MS again.  I have been unable to tx my sx or try a DMD because of cirrhosis.  i do take Ampyra and baclafen.  Ampyra is my only effective treatment.  baclafen helps my upper body and seemingly has no effect on my weight bearing muscles and joints. Ampyra helps me with fatigue, tenperatures, spasticity and weakness.  it also allows me to exercise.  my only defense against MS for the last decade has been movement from exercise and refusing help. 

   barry

Hi Gretchen I just happened to come over here to this forum to see maybe check on some information on MS and seen your post. I had wondered what had happened to you. Glad to see you back!

Gretchen I have moved from Illinois down to Kentucky just a couple of months ago. Upon moving I was getting everything transferred down to the doctors down here, and to the VA. My new doctor at the VA is scheduling me for some test concerning MS. They have me scheduled for new MRI of my brain later this month, and some EMG test and then neurology. I think I told you about me seeing a neurologist back in 2010 and after much debate he agreed to do an MRI of my brain, I had spots but he said he did not think it was MS related, and didn't know what the spots were from, and refused to do any further testing, and said it was just my back causing all my problems. Well the funny was I could never get a copy of the radiologist MRI report. Turns out he blocked me from getting the actual MRI report findings. Well with the move, I ending up getting copies of all my medical records, I mean everything! I needed the copies to bring down here with me as I have several different medical doctors that need copies of the stuff. Anyway I was looking through the stuff and I found the MRI and the report from the radiologist reading it. The report was marked not for patient viewing by the neurologist that I seen. The report said " There is a focus FLAIR signal abnormality in the anterior body of the right side of the corpus callosum and subtle FLAIR signal abnormality in the left parietal periventricular white matter, compatible with demyelinating disease." Need I say the report doesn't at all support what the neurologist told me!!! Need I say it just confirms what I have always said, I have never met a neurologist that I thought was honest and cared about his or her patient! For some reason most neurologist I have seen in my life have always blown me off, including when I was in the military and I had that massive herniated disc in my neck, the neurologist all said I was malingering! When they finally found out what the problem was I ended up having emergency surgery! So this neurologist response was typical of so many I have seen!

Anyway I had given copies of these medical records to my VA doctor down here and talked to him at length about some of the things that were going on with me. He actually spent over two hours with me including a pretty thorough examination, a couple of days later I was notified of the testing that he has ordered. He was especially concerned with my weakness in my limbs and balance problems. I would definitely be in trouble if I ever got stopped and asked to walk a straight line one foot in front of the other, as I would be laying on the ground in no time! Ha

Maybe I should of just sent you an E-mail or something, but I am glad to see you back! I do hope you are doing well!

White Beard

Sorry about not doing the paragraphs, bad habit of mine. I like it here in Kentucky weather is not as rough as it is in Illinois. Also live just a few miles from my sister and niece's and nephews.

Thanks for the info, I will talk to my VA doctor about it. Glad your back Gretchen. I will keep you informed on what I find out.

Gary!!!

You didn't miss read. I was mad and on may out. A very nice member emailed me and basically invited me to stop whining and start helping. So here I am. I appreciate your kind words.

Shuli!!!!

Such sweet words!!! Thank you!!! I am so glad to hear from you. You are amazing! 31 years and still you have a positive attitude! That is very inspiring to me.

I hope you get to know you better!

Gary, hi!
I love your phrase "I have no lesions on my soul and so I live with no limits." I believe your words are profoundly and essentially true. When we let ourselves understand and accept—to ‘live as’—our soul cannot be hurt or hindered, all kinds of possibilities open up for us.
Thanks for the inspiration.
I needed it today.
Blessings
Shuli