Hi there. Glad you're back, along with your fighting spirit.
I sure can't analyze your MRI reports or explain why they seem so different in such a short period. You will hear from me and no doubt many others here that you are not getting the right medical attention and that no matter how difficult it is, you just have to find better doctors. It's awful having to do that, I know from my own experience, and especially when you're feeling crappy and scared. But still it must be done.
If you have't had trauma or a history of migraines, then according to your MRI report, you're left with demyelination or white matter disease. What the latter is is beyond me, so I hope someone can give a good explanation. You are quite young and are hardly likely to have been having mini strokes or something similar, unless you've described problems I'm unaware of. But even if you do have this 'ischemic change,' they should be getting to the bottom of that too. Is it entirely harmless? Who knows? Limbo for that isn't good either.
However, demyelination is also suggested as a cause, and that seems to fit with your age and your symptoms much better. So of course, keep plugging and "illegitimi Non Carborundum." My witty lawyer father used to love that one. It's Latin for "Don't Let the Bastards Grind You Down." Hang in there, Mokibear.
I wish I had the expertise to sort out that MRI. Let me just say...it is VERY unusual to go from no lesions to 8. This is something that needs investigation promptly.
I totally agree with everything that "ess" says. I cannot top what she says at all. Don't let the Bastards Grind you Down......
We are here for you anytime. Please know that. I hope that our resident expert on MRI's can sort this one out. Jon? Are you around?
We love you "Mok."
Don't let the Bastards Grind You Down, oh I just love that. haha Thanks ess that was just great.
I haven't had head trauma or a history of migraines. I get headaches but not what I would call a migraine and I can't see that migraines would make my legs to the wonky dance. So as to the ishemic change, not sure what that is exactly the only thing close to a mini-stroke was when I lost the ability to speak normal. The doc at the er didn't think it was a stroke and really thought it was MS related when he heard of my other symptoms.
What I don't get is that the MS neuro said that he doubted it was MS because there were no lesions showing and that by now they should have been. Well apparently I have 8 so does that mean he never looked at the MRI results he had done himself and if he did was it to prove to the neuro he had the blow out with (she did the first in office exam on me and thought it was possible MS or a mimic) that she was wrong? How could a MS clinic not see lesions? Yet a normal hospital does. I'm soooo confused.
I thank you all for being here.
I love all of you too
First of all I'm not an expert on interpreting MRIs or their reports. I will gladly share what I have learned.
1) Interpreting a Brain MRI is more of an art than a science. Neurologists will not diagnose MS based on an MRI alone. There must be clinical presentation consistent with MS and the MRI reading. You may not have had a followup MRI of your spine if you were not experiencing issues with your extremities, and below your neck, particularly your legs.
2) MRI machines vary in what they will detect. It is possible that the MS clinic may have used a weaker machine than the latest one which might be stonger. MRIs for suspected MS should always be done w/ and w/o contrast. Its odd the MS clinic performed it w/o. Contrast is the generally excepted way of determining active lesions which can relate to symptoms being experienced at the time of the procedure. I had a lesion detected on my spinal cord that corresponded to adominal pain and numbness. Also, MS typically is demonstrated on MRI in a pattern so-to-speak. If your MRI does not match the pattern then the doctor will be less likely to DX you with it.
3) As odd as it sounds, lesions in the Brain are "better" to have than lesions on the spinal cord. Brain lesions tend to improve and the brain itself tends to reconfigure itself to go around the damaged area. Also there are alot of reasons for brain lesions other than MS, whereas a lesion on the spinal cord is MS. I read somewhere that 40% of all adults over the age of 50 will show some brain "white spots" on a MRI. The vast majority have no symptoms. So really the proper diagnosis is going to be mostly based on your clinical history and presentation of symptoms. MRI's, Lumbar Punctures, Blood tests will be used to help rule out other possibilites.
I hope this helps you understand better.
I too cannot explain your results, but am sooooo glad you're getting back in fighting form!
Go get 'em!
Hi, Moki! I glad that you were feeling up to giving us the gist of your MRI. I can understand your frustration; especially when you doctor is giving you such a hard time. Periventricular lesions can be migraine or ischemic in origin. The doctors are still reading my brain with and without contrast normal even though I have just found out after the third brain MRI read as completely "normal" with no lesions even mentioned that I have many WMLs. The radiologists are reading them as normal as I am over forty. However, as someone pointed out in another post several weeks ago, I do not think that having them is normal if it fits the clinical picture. Many people over forty have them; but, I had read somewhere that the majority of people over forty do not. The radiologist read my brain MRI as "normal" with no mention of lesions but went on to state at the bottom the brain MRI report that the spinal MRI was abnormal for multiple lesions. Based on the fact that my separate spinal MRI (which he also read) was abnormal, I would have thought that a thoracic MRI would have been recommended and the lesions in the head would have at least been mentioned. Without any indication of the WMLs a doctor may not have thought to check me for anticardiolipin and antiphospholipid disorder. I knew to see an immunologists and have the tests run.
Have you been tested for blood-clotting disorders and lupus, etc? There is a rare form of lupus that can mimic MS. Also, APL and other clotting dyscrasies can cause ischemia problems which can in turn cause white matter lesions, particularly periventricular as I understand it. Both of the above as well as other immune disorders can cause severe headaches. And, an autoimmune disorder such as lupus can affect your joints and strength and cause walking problems. And if you add another disorder such as an inner ear disorder then the walking can really be disrupted. And of course, eye problems can cause headaches. One system affects the other. Our bodies are supposed to be in homeostasis.
Also, how is your blood-pressure and cardiovascular system? Do you have mitral-valve prolapse or other possible heart disorder such as an open patent-oval? These things have been linked to migraines and/or ischemic changes. There are many other possible avenue for your physician to explore, possibly. I do not know your whole clinical picture or history or what you have been tested for. [I am not a doctor, of course; and I am restricted to just a brief moment on the forum tonight. So, I hope that this does not sound too disjointed or confusing. I am sorry I do not know you better.]
This still would not mean that you could not have MS or some other demylinating disease, however. Sometimes people get more than one immune/autoimmune disease at the same time. This is more common in lupus (supposedly) than MS, however. That was why my primary was not going to put MS in the chart as he said then doctors would want to blame everything on MS when I could have something else seriously wrong. Of course, we have trouble getting MS diagnosed so that we can get on copaxone or betaserone or another such drug. It is such a vicious circle.
I would take my reports, clinical notes and log, and all my films to at least one more specialist. You could even try calling the radiologist that read the film. I would find out if a neuroradiologist read your films. I was not even told about all my lesions until I had a neuroradiologist read the films. Then, I would try talking to the neuroradiologist. The neuroradiologist gave me more information than several other physicians and radiologist combined. I would ask them and another neuro as to a recommendation for a spinal MRI with and without contrast. I can understand why you are angry. I would try to get it done on a really good machine. I talked to the department for my last two MRIs and asked that they do a more detailed study and the pictures were so much better! Even their own department was amazed at the difference when they did additional slices, etc. Hopefully, that will help them to change their protocal and quality of testing in the future.
I do not know if this helps in any way; but, at least know that we are here for you.
Oh, and one last note. It probably would not hurt to have someone go with you for your next visit as it seems to me that the doctors are a little less dismissive sometimes when they know that there is someone else listening in. Also, the other person may remember something you forgot to ask or that the doctor said. And, they can validate what you are saying to the physician. I have seen it help.
I was unable to get someone to attend my last visit with me to a new neuro and it was terrible. I cannot help wondering what the attitude would have been had someone else been with me.
Anyway, I am thinking about you and praying for everyone on this forum. Take care and God bless. Continue keeping us informed, okay?