Did Everyone Here Have A Mri - And What Did It Show?

[Guest malosp]

Still have my symptoms. In fact, when I took Vitamin B12 which research says should be non-toxic I got sick. Very fast heart rate and had to stop. I am wondering if that means I am right that it may be B12 and I am repleting too fast. I am stumped as to what I have. I am going to a neurologist appointment in May and am wondering what I should ask for?

I am thinking it is Vitamin B12 but I don't know. I feel the nitrous oxide that was used on me may have caused a severe Vitamin B12 deficiency and did damage. I can't figure out what else it could be and I am angry that I have to wait so long for a specialist. I am scared and am tired of being ill. I used to be so healthy.

I wondering if everyone had a MRI that has been diagnosed with dysautonmia? What did the MRI reveal for some of you? Did you have lesions? Was the MRI clean? Should I demand an MRI?

I am scared and stumped as to what to do. I just know that my heart tests keep coming back normal but yet I have these weird symptoms of muscle aches, dizziness when I stand, inappropriate fast heart rate etc.

I can honestly feel what others on this site feel when these attacks happen...I cry sometimes when I read the posts because they hit so close to home. I feel for all of us. I am so tired of being told it is stress when I know it is not. I know I have some type of dysautonmia. I am starting to hate doctors because it is like one post on this site said "my labs are normal but I am not". And I feel that the doctors I have been to have so failed me because they ignore my pleas for help (and that there is something wrong) just because my labs are normal.

Should I ask for a MRI? I know I will ask for further tests to be run on my Vitamin levels.

[cmtaylor5]

Hi,

Sorry you're having such a frustrating time. I can relate to a lot of what you are writing. I think it will help if you find someone who can actually test you, and maybe start you on some medication to control your symptoms. As for the vitamin B12, there are blood tests that will indicate whether you are low on this vitamin or not. Have you had any bloodwork? None of my bloodwork comes back abnormal, but taking any vitamin supplements makes me very, very ill.

Every woman with a difficult to diagnose condition is told it is stress. It wasn't stress, but it sure was a relief to find some answers! I don't know whether or not to tell you to demand an MRI. I had one because I was experiencing disequilibrium.

I had my MRI 2 days after I was diagnosed with POTS. Mine came back completely clean, no sign of any lesions (I'm assuming you are worring about MS), however, it did show significant damage to some of the vertebrae in my neck. My electrophysiologist and neurologist both thought that the location of the compression in my neck could be contributing to or causing my POTS. I was sent to physical therapy to help correct the problem.

After my diagnosis, I was started on a low dose beta blocker, and that changed my life. I live a pretty normal life now, with just a few limitations. I was exhausted and tachycardic all the time before. My heart would pound when I lay down, and shoot up over 140 every time I stood. These are very rare occurrences for me now. In fact, I have not had an episode of tachycardia (unless I'm really exerting myself) in over 9 months.

The key for you is to find a doctor who is familiar with dysautonomia. Repeatedly seeing a doctor who doesn't know what to look for is going to get you nowhere. I was initially misdiagnosed and stumped several doctors. When I finally saw my electrophysiologist for the first time, I described my symptoms, he checked my heart rate and blood pressure resting and upright, and I had a diagnosis within 10 minutes of him entering the exam room. That's because he knew what to look for.

I know that you feel scared, anxious, and tired of feeling awful. There is hope, though. Take a look at the list of recommended physicians on this site. Find someone in your area. When you call to make an appt., check with the nurse and make sure they are well versed in POTS.

Good Luck!

Carolyn

[dianaD]

Hi, I have to agree with Carolyn. I'd try to find a doctor with is familiar with treating dysautonomia. They may want am MRI (mine was clean, too), but they may not feel that they need one. Like Carolyn said, once you get to good doc, they can figure things out pretty quickly because they know what to look for.

I had every test under the sun (all normal, pretty much) for 9 solid months. Went to Mayo, and within 40 minutes, they figured out it was probably POTS. They had me in testing the next morning, and within 5 minutes on the TTT, BINGO! a diagnosis!! The next day, a treatment plan (now the treatment plan didn't work, but, hey, that's asking a lot!).

Did you check the doc list on this web site?

Diana

[stellakitty]

I have been sick since sixth grade, so that would five years. My mom and I asked for a MRI of my head a cervical spine after watching mystery diagnosis, as no one had ever thought to do any MRI. Mine showed a chiari, a cyst in my cerebellum, two bulging disks, and my spinal cord is rubbing agianst my vertebrae without any thing between the two. I just had an SSEP and BAERs on monday and Dr. Heffez is going to decide whether or not he wants to do a decompression. But I am pretty ill right now, unable to even read a bp, I can't stand without fainting, and require the use of oxygen. I am still in awe that my mom and I actually had to ask for a MRI in the past five years! I had an MRI of my spine between my shoulders to make sure that my scoliosis wasn't doing anything wierd, and another to make sure that I didn't have a dermatone that was causing my abdominal pain but not one of my head to check for a chiari or any other structural problems. It is crazy. If you feel that you need to ask for an MRI, ask for one... ecspecially if it will give you peace of mind.

Alexa

[mtkim]

I have a B-12 deficiency (just a blood test to determine). I receive an injection twice a month. It really does help me, in fact, when I first started getting the injections (looks like red KoolAid) I had a dream that I became addicted to it because it made me feel better and I was taking the metal tops off the vials and just drinking the stuff. If you do have a B-12 deficiency just taking it orally doesn't help. Your body receives the B-12 through absorption so if you are not absorbing it normally then it will not do any good to take it orally.

I have had about three MRIs and each has shown white matter lesions with the possibility raised of MS by the radiologist, but this has been ruled out by a neurologist. (always circles).

Kim

[dizzygirl]

Well MRI might be a good idea to look at your brain and pituitary glanda and stuff as well.. and look at your cervical spine...cant hurt to have it looked at..

I have had several MRIs.. my most recent one showed cysts or something on my pituitary and my pineal gland.. and a MRI in 2001.. showed a herniated disk at the c5-c6 level.. and my spine just under that is completely rotated in the opposite direction.. and i have scoliosis of the spine as well..

you can request your doc to order you an MRI

goodluck

[MNsue]

After having a number of unexplain Neuro symptoms, I had an MRI of the Brain and spine. It all come out clear. They needed to make sure that I did not have a stroke or MS.

I have been diagnosed with POTS, but the Neuro symptoms have yet to go away.

Rhonda

[Wufflebear]

I have had several MRI's and all were clean. Just started low dose of beta blocker (a few days ago) and so far I feel so much better. The only thing that has showed anything was the tilt table test of course and one a few EEG's.

[AJVDK]

After reading alll you post about MRI's . It make me think that I should have one. I the last six years of fight this I have never had an MRI. THe problem now is I had a pacer placed in July 2004. So now I can not have an MRI. Does anyone know is there anything they can do, so a person with a pacer could have an MRI?

[lthomas521]

My MRI showed more cortical atrophy than I'm supposed to have at my age. My internist was disturbed when he saw that, because I was complaining about how spaced out I was. However, I was only spaced out because I'd stopped my thiamine supplementation for a few days so that he could run some tests. I was fine after a day or so back on thiamine. I told him that I wasn't surprised about the cortical atrophy. You can't keep cutting off the circulation to someone's brain over and over again on a daily basis for years without there being some consequence.

I still regret that my commitment to nonviolence precluded me from slapping the moron endocrinologist who told me that I was "catastrophizing" by imagining that my severe orthostatic hypotension (on the order of 48/48 mm Hg on a bad day) might be causing brain damage. Maybe, if my circulatory problems don't improve, my brain will ultimately shrink until it is as small, and as unconvoluted, as his.

MRI's are useful for finding structural problems (e.g., tumors and cysts) and damage resulting from inflammation, etc. However, if your problem is purely chemical (e.g., no norepinephrine reuptake), it wouldn't show up on an MRI.

[MNsue]

My MRI showed more cortical atrophy than I'm supposed to have at my age. My internist was disturbed when he saw that, because I was complaining about how spaced out I was. However, I was only spaced out because I'd stopped my thiamine supplementation for a few days so that he could run some tests. I was fine after a day or so back on thiamine. I told him that I wasn't surprised about the cortical atrophy. You can't keep cutting off the circulation to someone's brain over and over again on a daily basis for years without there being some consequence.

I still regret that my commitment to nonviolence precluded me from slapping the moron endocrinologist who told me that I was "catastrophizing" by imagining that my severe orthostatic hypotension (on the order of 48/48 mm Hg on a bad day) might be causing brain damage. Maybe, if my circulatory problems don't improve, my brain will ultimately shrink until it is as small, and as unconvoluted, as his.

MRI's are useful for finding structural problems (e.g., tumors and cysts) and damage resulting from inflammation, etc. However, if your problem is purely chemical (e.g., no norepinephrine reuptake), it wouldn't show up on an MRI.

Your response gave me a good laugh?

Thanks,

Rhonda.

[calypso]

My MRI was normal; the only item worthy of note was that my pituitary gland appeared to look "full." But it was not enlarged enough to warrant more testing. Plus, I had a blood test that had something to do with pituitary function and it was normal.

Hope you get some answers soon.

Amy

[Guest malosp]

Hi everyone and thanks for the posts.

So my consensus is that you cannot use a MRI to diagnose POTS or at least most dysautonomias?

In otherwords, the doctors do not use it as a diagnostic tool but rather just to rule things out like MS etc?

Thanks, still waiting for my neurologist appt. - not feeling much better. Dizzy, headaches, muscle aches, still fast heart rate at inappropriate times.

Just waiting........................................