Just got my brain MRI results

[SnappyK]

Well, this was unexpected. I just got the report on my brain MRI and there are two "multifocal abnormal white matter lesions with characteristic appearance and location for demyelinating disease such as multiple sclerosis." Everything else looks fine. The radiologist concluded that the findings are consistent with a demyelinating disease.

The shocking thing to me is he compared the MRI images to a brain MRI I had in October 2011, when I was having vision problems, and he found the same lesions on there! I have that report and it said everything was fine. I guess the radiologist in 2011 missed them and the neurologist I saw then probably just went by the report and not the images themselves, plus the only symptom I had was occasional loss of vision, which went away on its own in late 2011. Wow. According to the new images, there is no evidence of acute demyelination. So these lesions have been here for several years and aren't noticeably worse. I am taking all of that as good news.

I still don't know if I have MS or not, but whatever's going on in there is happening slowly. I am thankful to finally have actual evidence of something that would explain most of my symptoms. I am seeing my neurologist on Tuesday for follow-up and next steps.

[jackD]

When it comes to MS lesions three important considerations are LOCATION, LOCATION, LOCATION.

MS lesions are found in the CORPUS CALLOSUM and PERIVENTRIICULAR most often.

Vascular lesions are uncommon in these locations.

jackD

http://www.radiologyassistant.nl/en/p45 ... rosis.html

[SnappyK]

I have one lesion in the corpus callosum (which is "oriented perpendicularly from the flexor surface") and one in the cerebellar white matter.

[SnappyK]

Can't believe it's been five months since my last post and I still don't have a diagnosis. Here's an update. Any advice is appreciated (and yes, I know it can't replace a medical opinion. Believe me, I'm seeing an incredible number of doctors.)

I've had all sorts of bloodwork, and it's all come back normal, except for general inflammation markers (ESR almost 70, CRP in the mid-30s). I'm not a diabetic. I don't have a thyroid issue. All my vitamin levels are fine (vitamin D is 71, etc.) I've also had a lumbar puncture. It indicated additional oligoclonal bands in my CSF not present in my blood.

I've had two sets of skin biopsies. The first indicated non-length dependent small fiber neuropathy, but my symptoms really didn't match that diagnosis. The second indicated everything was normal.

I've had several MRIs, including cervical spine in January, brain in March, and repeats of both of those last week, with and without contrast. I cannot get any consensus on what the brain MRIs show. The March radiologist said I had two white matter lesions in typical MS locations but that both were also present in a 2011 MRI, which the radiologist at that time said was clear. I've shown the 2011 and March 2016 images to two general neurologists and an MS specialist. The two general neurologists disagreed with the March 2016 radiologist and felt that I had one white matter lesion in 2011 and two in 2016. The MS specialist disagreed with all others and felt that I had one white matter lesion in 2011 and one in 2016.

I just got the report from the August 2016 radiologist on the latest MRI, and he says that it shows four white matter lesions (one in the corpus callosum, one in the cerebellum, and two periventricular) and that this indicates no change from March! I'm just about ready to scream at this point. The general neurologists I see say I probably have MS, but they want me to be diagnosed and treated by an MS specialist. The MS specialists I see say I probably don't have MS, but they don't know what I have. So around and around we go. Six neurologists and no agreement.

I am seeing neurologist #7 next week, another MS specialist, and I am hoping she will have some answers. In the meantime, is there anything I can do to prepare for that appointment? Is there such a thing as a second opinion for a radiologist? And a third and a fourth? Is there some other condition that diagnostically looks an awful lot like MS? (I've searched and searched but been unable to find anything.) Really grasping for straws at this point.

[lyndacarol]

Can't believe it's been five months since my last post and I still don't have a diagnosis. Here's an update. Any advice is appreciated (and yes, I know it can't replace a medical opinion. Believe me, I'm seeing an incredible number of doctors.)

I've had all sorts of bloodwork, and it's all come back normal, except for general inflammation markers (ESR almost 70, CRP in the mid-30s). I'm not a diabetic. I don't have a thyroid issue. All my vitamin levels are fine (vitamin D is 71, etc.)

You have been very busy! And very thorough, too. I understand your frustration – you certainly deserve the answer by now.

At 71 ng/ML, your vitamin D is good. (At my January test, my Vit D level was 24 ng/mL – not good.) "All the vitamin levels" were fine… What vitamin levels specifically were tested? Were any mineral levels tested? Magnesium? Zinc? How is your calcium level?

Where, oh where is jimmylegs? Nutrient levels are her area of expertise. I know that mineral deficiencies/insufficiencies can cause neurological symptoms.

Have doctors look for Lyme disease? Celiac disease? By any chance, would your doctors order a simple, relatively inexpensive, fasting insulin test?

Like you, I am stymied – grasping at straws; I wish I could offer you more. I can only encourage you to keep working with your doctors; be strong and don't give up.

[SnappyK]

Can't believe it's been five months since my last post and I still don't have a diagnosis. Here's an update. Any advice is appreciated (and yes, I know it can't replace a medical opinion. Believe me, I'm seeing an incredible number of doctors.)

I've had all sorts of bloodwork, and it's all come back normal, except for general inflammation markers (ESR almost 70, CRP in the mid-30s). I'm not a diabetic. I don't have a thyroid issue. All my vitamin levels are fine (vitamin D is 71, etc.)

You have been very busy! And very thorough, too. I understand your frustration – you certainly deserve the answer by now.

At 71 ng/ML, your vitamin D is good. (At my January test, my Vit D level was 24 ng/mL – not good.) "All the vitamin levels" were fine… What vitamin levels specifically were tested? Were any mineral levels tested? Magnesium? Zinc? How is your calcium level?

Where, oh where is jimmylegs? Nutrient levels are her area of expertise. I know that mineral deficiencies/insufficiencies can cause neurological symptoms.

Have doctors look for Lyme disease? Celiac disease? By any chance, would your doctors order a simple, relatively inexpensive, fasting insulin test?

Like you, I am stymied – grasping at straws; I wish I could offer you more. I can only encourage you to keep working with your doctors; be strong and don't give up.

Thanks, I appreciate the support and suggestions. I've been tested for Lyme and done a three-week course of doxycycline just in case it was Lyme anyway. Didn't change anything. I've been tested for celiac and because I have GI tract symptoms, I had a colonoscopy and upper endoscopy. Both showed absolutely nothing. I've done three different kind of glucose tests, including a two-hour glucose tolerance test, and all three gave normal results.

I've had "standard" vitamins and minerals tested but I don't have those results handy this minute. I know my calcium was fine. My B12 was around 500 and because I was misdiagnosed with small fiber neuropathy and I have a friend who swears B12 helps hers, I have been taking B12 daily since then. I take a multivitamin and seven other vitamin and mineral supplements daily, including magnesium oxide. None of them have made any noticeable difference in my symptoms.

I'm off to see a neurologist I trust this morning for a second opinion on my latest MRI. I get second opinions (and sometimes third and fourth opinions) on everything now.

[lyndacarol]

I've been tested for Lyme and done a three-week course of doxycycline just in case it was Lyme anyway. Didn't change anything. I've been tested for celiac and because I have GI tract symptoms, I had a colonoscopy and upper endoscopy. Both showed absolutely nothing. I've done three different kind of glucose tests, including a two-hour glucose tolerance test, and all three gave normal results.

I've had "standard" vitamins and minerals tested but I don't have those results handy this minute. I know my calcium was fine. My B12 was around 500 and because I was misdiagnosed with small fiber neuropathy and I have a friend who swears B12 helps hers, I have been taking B12 daily since then. I take a multivitamin and seven other vitamin and mineral supplements daily, including magnesium oxide. None of them have made any noticeable difference in my symptoms.

I'm off to see a neurologist I trust this morning for a second opinion on my latest MRI. I get second opinions (and sometimes third and fourth opinions) on everything now.

If you will tolerate a few more ideas, I will share a couple more thoughts:

Your mention of GI tract symptoms makes me think of vitamin B12 again. If you have taken medications such as proton pump inhibitors (Prevacid, Nexium, etc.), the stomach acid required for the B12 pathway is reduced.

There is no commonly agreed upon standard range for B12. In Japan the minimum recommended level is 500 pg/mL; in the US the minimum acceptable levels is generally around 200 pg/mL. In the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.), the authors state (on page 11): “For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/mL.”

At one time your B12 level was 487 pg/mL; you were using cyanocobalamin. Using methylcobalamin and raising your B12 level might be a good idea. It might also be a good idea to monitor with a current serum B12 test (and request an RBC folate test, a serum homocysteine test, and a methylmalonic acid test also, since these will indicate how well your body is using B12). Has any doctor discussed anemia with you? Where did your MCV (Mean Corpuscular Volume) fall within your lab's standard range?

Even if B12 is the root of the problem and your serum B12 is raised to a more optimal level, this is not an overnight fix – it takes a while for stores to be replenished and systems to heal.

It is possible to have an acceptable level of B12 in the blood and still be deficient in the cells/tissue.

By the way, the fasting insulin test is not a glucose test – this blood test measuring insulin is a totally different thing.

As for your magnesium supplement… Magnesium oxide is not readily absorbed. You may find a better choice in the recent thread from NHE (I myself have just ordered magnesium threonate – going to give it a try in place of the magnesium glycinate I have taken for years): http://www.thisisms.com/forum/natural-a ... 28183.html

[NHE]

As for your magnesium supplement… Magnesium oxide is not readily absorbed. You may find a better choice in the recent thread from NHE (I myself have just ordered magnesium threonate – going to give it a try in place of the magnesium glycinate I have taken for years): http://www.thisisms.com/forum/natural-a ... 28183.html

Magnesium threonate is a bit pricey. Less expensive options would be magnesium glycinate or the citrate form which is also better than magnesium oxide.

[jimmylegs]

heya i am here. on a deadline for thesis.

[jimmylegs]

snappy i went back and read your op. any change in sx since then? saw your serum 25(OH)D3 and cobalamin #s both look solid. can you describe the rest of your daily supplement regimen? and any meds? good to rule out anything that might be suboptimal or contributing to suboptimal function (which can certainly be the case even while 'normal'). then the docs have a clean list of 'real' sx to work from. much is known in the public health arena about how we need to look after ourselves better, but it doesn't always translate over well to clinical practice. a public health person might know you're not getting enough x, but all blood work will be fine regardless.
anyway i would also key in on mag to start purely since you were taking 4000IU d3. for how long? when i did that for an extended period, i was also taking daily mag oxide and it was still a disaster. pharmacist turned me on to more mag and better timed mag and it cleared up some scariest stuff pretty quickly (well the most dire stuff turned around in a couple days but it took longer for related more low key stuff to resolve). i had to figure out which form worked best for me myself. i am good with mag glycinate at this point but don't need to take it daily any more. sry i can't read back through everything. i'm science's b***** right now. duty calls. back later

[SnappyK]

Sorry, between feeling rotten and being swamped at work, I haven't had time to answer all of your questions and respond to your posts. Just wanted to say quickly that three weeks ago a movement disorders specialist diagnosed my spasms and twitches only (not my other symptoms) as paroxysmal nonkinesigenic dyskinesia (PNKD). He started me on carbamazepine (100 mg twice a day) and that has not only nearly eliminated the spasms and twitches, but it's also greatly reduced my pain and eliminated my GI issues. Some of my symptoms, such as balance and memory issues, have not improved at all. I know that PNKD can be caused by MS and other neurological conditions, so I am assuming whatever is causing my other symptoms has also caused the dyskinesia.