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465975 tn?1224231635

looking for Answers

I have had symtoms of MS for going on two years. I have lived with chronic pain since October '06. I had c-2,3 & 4 fused in feb of' 06. In October of '06 the plate at the fuse had to be removed because of "settling". Doctor had to fuse c-6,7,& 8 at the same time, disk was herniating toward the cord. The first surgery was done immediately because of how bad the cord was pinched off. Neuro doc has concluded feeling all but gone in both hands. This because of the pinch. There was a spot that showed in the cord up until October of '07. The surgeon says upon MRI reading with/without contrast that it is nearly gone. only a scar left. I have been getting worse ever since. I have had steroid therapy, epidurauls in my neck for pain. Those have been short term fixes. 4 weeks maximum relief for any one procedure. Brain MRI with/wo in January '08 clear. VERY indepth blood work shows nothing, LP in January show irritation and high release pressure, everything else shows normal. Brain EEG shows normal. I have experienced breath shortness and was told I am hyper ventilating. ALL of these tests were completed between January and February of 2008. I was sent to a clinic in metro Atlanta and seen by an "expert" he asks all about what was going on and I told him the story. I have in the past few months had a few bouts with incontinence. That was the only thing he addressed. We discussed pain meds, new meds to take, Lycira was one. I have been on neurotin for two years ( 3900mg/day) he agrees it has run its course and the benefit is minimal. Cymbolta is another new one we will take now instead of effexor. Do you know that this guy wrote me a script for the bladder control med detrol only. That was it ! I have had over 11 MRIs of my brain, c-spine, t-spine and lumbar. The majority being of my C-spine. The appointment lasted 20-25 minutes tops. When I went to find the doctor he was gone, in seeing another patient. The one thing he did share with my referring neuro was he thought I had tranversa myelitis. After reading her the riot act and voicing my displeasure, she agreed to give me the cymbolta, The expert wants to see me in six weeks. i don't think I can take another visit like that, I had high hopes for this place only to be kicked in the teeth. Thanks for reading. All comments or suggestions are welcome.   Mike      
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465975 tn?1224231635
thanks santana8 I will keep you posted May 6 is coming up, that is the next appointment day. Have a great day.
mike
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429949 tn?1224691579
Santana is a nick name my husband started for me. My real name is Carla, so he started calling me carlos santana, and the santana sort of stuck around with him. He is the only one who calls me this except for on this forum! Let me know how  it goes with you!

Santana
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465975 tn?1224231635
Sorry this reply is so late. I have been on vacation trying to decide my next move. thank you for the kind words of encourgement. you have the name of one of my favorite musicians. Doctors these days could use a class in feelings these docs now days add to a persons frustration. i will keep positive. And I hope to learn from all those in this fourm. Good Luck to you as well and god Bless you.....mike
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429949 tn?1224691579
Hi, nice to meet you!  First let me say You have a good first name, that is my husbands name and also my 16 year old son. I am sorry you are having so much pain, and trouble getting any real help. I have been trying to get a dx for two years tomarrow. For now my dx is Adem, but I am being watched for new lesions on the brain or a second attack. So far, nothing new, and that is good news!

I have suffered the most from the vision disturbances which has caused a lot of sevier pain and pressure behind the eyes, face and head. They have not given me anything for pain, and told me to take tylenol or motrin. Thankfully after the first year the pain finally started to improve, but I still have bouts of it from the sevier dry eye about twice a week, and I do soaks and drops for this pain. Yeap! still not pain medicine for me.

I am not the one to comment on what is going on with you as there are a lot of people here on the forum who have suffered pain from spinal lesions and injury and They are more educated on this than I am. I am sure they will jump in here and try to help you with your questions soon.

The main reason I wanted to respond was to say that I too was sent to a neuro- opthalmologist that was a  5 hour drive for me. I too had high hopes for this visit. He spent about 20 min with me and was absolutely no help to me. He didn't know how to explain the damage in the visual pathways no better than my regular neuro and regular opthalmologist. I went home and studied it myself on the computer and learned more than he told me after all that distance traveled and expense of the trip.I was disappointed to say the least. So I do understand you frustration with this doctor.

Try to hang in there and stay as possitive as you can. Stay around here and you will learn a lot that will help you.

Take Care
Santana8
Helpful - 0
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