Today I had another MRI of my C spine done, 3 months after the last one. This time it was done on a T2 machine- what a difference! In the first, inhomogeneity was noted in the spinal cord, so the radiologist could not rule in or out any lesions. Highly recommend going for higher resolution machines; even without a radiologist report yet, I can see no spinal lesions.
Tests to date:
Brain MRI’s show numerous lesions which the neuro says are not typical of MS (pix are posted in my profile).
LP came back clear, with no O bands. Comprehensive panel ruling out many mimics.
Spinal MRI does not appear to show any lesions (pix are so clear on the most recent that I feel comfortable making that statement before receiving the radiologist’s report).
Visual Field test- normal
Blood tests- normal, rule out many mimics.
Post might be long as I’ll be giving history to ask for guidance.
On the most recent MRI, I can see much clearer now compression on the spinal cord. My neuro thinks that a lot of my sx are due to degenerative disc disease in the C and L spine. I also have cysts in the L and T spine that impinge on nerves. Last L spine MRI was done years ago, so I don’t know how much more nerve damage has taken place which might explain increasing weakness and pain in my legs over the last year.
DDD would definitely fit the picture for some of my sx, but not all and does not explain why I have so many lesions on my brain.
DDD would/could explain:
Paresthesia- numbness and tingling in right hand, weird sensations on lower legs.
Gait and balance problems
DDD does not seem to explain:
Lightheadness/dizziness (one of my major complaints that has caused me to miss many days of work due to being unable to drive)
Blurred/double vision that is episodic
Language problems- slurred or stumbled speech, using wrong words and now problems with written language
Headaches- tend to be episodic, occurring daily for prolonged periods and following the same pattern.
I am 54 years young and underweight. I have a history of DVT (hereditary) and lead poisoning. I also went through menopause at a very young age (43) and now have osteoporosis. I have been under considerable stress for a number of years and my BP goes all over the map; this is most likely stress related as no tests indicate a cause for this. I am a smoker (tsk, tsk…. would love to quit).
There is something nagging me in the back of my head that this may be related to lead poisoning that happened while I was pregnant and nursing my son from 1990 to 1992. My sx started in 2002 when I hit menopause, which creates all kinds of hormonal changes in the body as well as the bones.
So far I have been pleased with the neuro that I have been seeing since March, yet at the same time, I’m concerned that she will focus on the DDD and not go deeper into the other sx. What would your suggestions be in terms of asking her to probe deeper and what tests might I request?
Thanks in advance for any and all suggestions offered.
I just looked at your MRI. I am just so mad at these doctors. How many lesions do you have to have for these guys. You have stuff going on in alot of places. They have really treated you poorly. Just makes my blood boil!!!
I suggest going to a new doctor and starting fresh. You need new sets of eyes to look at you, listen and do something. This is ridiculous.
You don't know for sure about the new MRI, perhaps the radiologist will see something and remember to include it in his report.
Did your spinal fluid have an elevated Igg Index?
Have you had any of the tests to rule out heavy metals? I know there is a urine test that requires you to collect urine for a 24 hour period. Seems like a logical next step since you know you have had the lead poisoining already. Is there any possibility that you are being poisoned right now by something in your environment? I know you have been tested for Lyme Disease becuase I remember you talking about it.
I know that DDD is a very painful disease so it's nothing to be brushed off. But like you said, it doesn't answer all of your symptoms. Do you have a spine specialist or Rehab doctor that can rule out DDD as the reason for your symptoms.
I'm so sorry that you haven;t had a definitive diagnosis yet.
Thanks for the hugs, they definitely make me feel better.
Right now I have enough faith in my new neuro to push her for answers as far as the brain lesions are concerned; I just need to be able to figure out how to do it and come up with some ideas for guidance.
I have not had any testing done for heavy metals since 1992. Exposure was from burning garbage from a boatyard dump in Antigua. We were about 300 yards downwind and they were burning marine paint tins and marine batteries two or three times a week. We were living on the deck of a boat at the time, so not only were we breathing this stuff in while the burning took place, we also breathed in the ash that settled on our bedding. I fell overboard 3 times in a few months and no longer felt comfortable watch a toddler on a boat without life lines, so we came back to the states. My son was dx with lead poisoning via a lead filter paper test with measured over 50 mcg/dl after being here for 3 months (half life of lead in soft tissue is 1 month, with 75 mcg/dl considered toxic), but lead filter paper tests have a high degree of error. My son is ADHD and I am fairly certain that we all were at toxic levels at some point and contrary to what the specialist at Yale said, I believe that we had chronic, not acute lead poisoning.
Excess lead stores itself in the bones and leeches into the blood system. Research is not conclusive in terms of the half life of lead in bones. Just think that it is curious that my sx started when I hit menopause, when bones become more porous.
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