DDD- What to Expect?

[Audrey_M]

I've been dealing with neuro issues for 8 plus years. Brain MRI shows numerous lesions, but MS has been ruled out, as have other mimics. Neuro thinks it is DDD based on C spine MRIs. Older MRI's (2006) of the L spine also showed problems. I also have a cyst on the T spine, but can't remember if she said there is any nerve impingement.

In any event, I have been dealing with symptoms that come and go in cycles that usually last 3 to 6 months. Biggest issues are:

Balance problems
Being lightheaded or dizzy
Blurred or double vision
Numbness and tingling (face, hands, legs)
Legs- weakness, or feeling rubbery, pain.
Hyperreflexia, R leg
Bowel problems
Headaches
L'hermittes sign
Back and neck stiffness and pain

What types of treatment are out there and what has worked for people? I'm tired or being in pain and missing days of work not being able to drive with balance issues/dizziness. The doctor does not think the balance issue will resolve itself.

Have cognitive problems as well, but that should not be related to the back. Will have to find out why I have all those bubbles on the brain.

[Joyful50]

11 years ago I was so lucky to find a wonderful Doctor at the Cleveland Clinic who is very involved in the study of this disease. He has diagnosed me with Carnitine Deficiency and a Complex II/Ill defect. Carnitine is required for the body to convert fat into energy and to remove some toxic waste products from the body. A normal Carnitine level is 50, mine was 29. There is a blockage in the complex II/Ill area of the respiratory chain. When anyone of these steps is blocked, a mitochondrial disease can occur. The body can't function properly because the cell's ability to make energy is reduced or stopped, and metabolic intermediates and toxic by-products begin to build up. The energy shortage in the tissues is the major cause of muscle weakness, fatigue and problems in the heart, kidneys, eyes and endocrine system. The buildup Of toxic intermediates can be responsible for liver problems, muscle cramps, brain dysfunction or even greater mitochondrial damage. Many times these two types of problems reinforce one another, each making the other worse.

Currently there are no known cures. The treatments that are available are limited. Most treatments and medications address only symptoms of the mitochondrial disorder, not the disorder itself.

I only have so much energy available on a daily basis. Some days I feel okay for part of the day. Some days I get tired just getting ready for the day.  I still have to watch how much I do when I do have energy because it does not last long and overdoing will cause me to crash for days or weeks.

My husband is there for me no matter what. I do not know how I would handle this if I did not have him. He takes such good care of me. He knows what I need even if I am unable to tell him. Our 36 years together have changed dramatically over the last 11 years and as this disease progresses even more, there will be more hurdles for us to cross than we even know. Like my doctor says, it may progress at this rate for a few more years and then go downhill. I just never know what is around the corner.

I guess I have given you a lot to think about. Let me know if you have more questions.
Joyful

[Audrey_M]

Thanks for your post.

I see the neuro this coming Friday. One of the things that I was going to discuss with her was my history of lead poisoning in the early 90's and if this somehow could be coming into play. My sx really became noticeable when I hit menopause at an early age; between hormonal and bone changes, lead may be leeching out from my bones at a higher rate now.

I did some research on mitochondrial disorder and decided to add the word lead in the search. I found several clinical studies that interpret lead as being responsible for mitochondrial malfunction and degeneration. This makes it all that much more important for me to bring the lead poisoning into the discussion.

What is your quality of life, prognosis and treatment, if you don't mind me asking?

Audrey

[Joyful50]

Hi, Your information sounds kind of familiar to me. I had alot of the same symptoms as you describe here for a lot of years also. I have sever osterarthritis in my neck and spine since I was in my late 30s. I am 52 now.
I was checked for MS, Rhuemtoid Arthritis, and possible nerve damage.
I was finaly diagnosed with a Mitochondrial disorder. You should mention this to your doctor, if he/she questions you about it, have him look it up on umdf.org to see what tests to run on you. This could be the answer you are looking for. Just an idea to have the dr look into for you.
Best of Luck
Joyful50