Successful MRI with pacemaker

[vanvechten]

I just returned from the Univ. of PA where I had an MRI of botht he brain and the spine. I have a pacemaker implant. Although I ignored a cocky cardiologist, I had a good experience there and highly recommend their facility.  They make adjustments to both the pacemaker as well as the MRI settings, and I experienced no problems.  Hope this information helps those like me who have waited for one YEAR to have an MRI and grew so tired of hearing , "If only we could do an MRI"! I am anxiously awaiting results, as can be expected.  

[Lulu54]

Greetings - sorry, but I too missed your post on New Year's eve.  I am not the medical whiz like Q is, and I always learn from reading her responses.  I hope you picked up something new in there too.  

I can sure understand the depression - it would be hard to not be blue over all the problems you have experienced.  Please work on finding diversions  that can help you escape the pressing thoughts of all this, even though I realize they would only be temporary diversions at best.  Even watching movies with your family (the libraries all have great assortments to check out) might give you a much needed mental break.

Please discuss your depression with your doctors - they may be able to help you with  drugs or talk therapy, or a combination of both.  Remember too that depression can be caused by our illnesses and isn't always just caused by our personal situations.    My guess is you have a combination of both going on here.

Q is right - if you need to grab the attention of any of us, be sure to drop us a note.

hang in there - answers have to be coming for you.

be well,
L

[Quixotic1]

Hi, I'm sorry I didn't see this last post.  I don't read every post.  For you and others, in the future if you would like a response from me or anyone, just drop us a note or a private message and tell us.  That way you don't have to wait in frustration.

I am so sorry that the MRI didn't help any toward finding out what is wrong.  I looked back through a smattering your posts on MH through the last 13 months or so and I am so sorry you are suffering, having difficulty in your profession and worried about such a severe group of illnesses.

You saw the movement specialist and the extra movement you are having with your arm is being termed chorea, right?  I see that at one point they were calling it Syndenham's Chorea.  Where did that assess go to?

You have symptoms that could point to several diseases.  Having chorea does not exclude MS.  There are ample case-reports of chorea (and most other movement disorders) in MS.  I see that you have already explored most of what I know about you and your symptoms.

The negative MRI works heavily against you getting a diagnosis of MS, especially since chorea is so uncommon in MS.

ALS sounds like it remains a possibility.  I hate to even write those words, but I know you have explored that possibility over and over.  I do not know enough about ALS to say much about it.  I do know that it can defy diagnosis for a long time, and that EMGs can be repeatedly negative.

Sydenham's Chorea - well this does occur in adults, but I am not aware of it causing all your other symptoms.

I have trouble believing that your sudden heart-block which required the pacemaker is not a part of this 2-year nightmare you are having.

I have a concern about the thyroid nodules and the CT Scan that reported that the appearance of the lymph nodes was consistent with cancer.  I know that your specimens were sent for pathology, and this is not my field of expertise, but I still wonder if all the odd neurological symptoms you are having are due to something called the "Paraneoplastic Syndrome."  This is an immunological response to many cancers that cause antibodies to form against other tissues in the body, including the nervous system.  I did look and find ONE report of advanced heart-block as part of a paraneoplastic syndrome from malignant thymoma.

Now, it sounds like your neurologist is not interested in doing further testing.  Is this correct?  If so, you need a neuro that will continue to be your medical advocate.  It would seem that you need serial EMGs, possibly a muscle biopsy.  To rule out the paraneoplastic syndrome you could see on oncologist or discuss this with your neurologist.

Finally, a new thought popped into my head.  There is a category of disorders of the mitochondria which are the intracellular energy engines.  Usually the mitochondrial disorders appear in children, but there are some that occur in adulthood, called Adult-Onset Mitochondrial Cytopathies.  I did a quick search and found that this are associated with symptoms in many different organ systems, like you have.  Specifically, you can see heart-block, chorea, muscle weakness, neuropathies and many other symptoms.  So, if this has not been looked at, you might seek out the doctors that study these things.  A good neurologist might not know much about them, but would be able to learn what to search for.  I believe that the diagnosis is made by muscle biopsy.  Here are two sites I found.  Remember that most types of these disorders are found in children so that when you see "failure to grow" as a symptom - that would apply to children.  You might even need to see an academic pedicatric neurology group.  Sometimes there are diseases that only the pediatric doctors see, so they also see the adults with that disorder (like cystic fibrosis, hemophilia, and sickle cell anemia)

http://www.tsbvi.edu/Outreach/seehear/spring02/mitochondrial.htm

http://www.mitochondrial.net/showabstract.php?pmid=15597339

This last is a summary paper from 2001 which describes the disorders in detail written by a guy at the Cleveland Clinic.

http://www.emdn-mitonet.co.uk/PDF/COHEN701MitoAdults.pdf

I wish I knew more.  This probably just rehashed stuff you have already been through.  But, for now, it is all I could come up with.  Sorry it wasn't more pleasant.

I am so sorry you are depressed.  Losing function without answers is h*ll on earth.  Many of us have been there.  Please stay with us and let us see you through this.  You have been through a whole slough of other forums without answers and this is as good a place as any to spend Limboland.  Also there is a discussion group just for support for neuro limboland.

{{{{{{{HUGS}}}}}}}

Quix

[vanvechten]

Would love to have a response from you and Quix. Am quite depressed.

[vanvechten]

Well......MRI results show no evidence of MS.  Nurse says neurologist reports very small disk herniation, but nothing that would explain my symptoms this past year.  Yesterday, I actually experienced so much fatigue that I investigated,for the first time, whether we could manage if I were on disability.  I see my doctor the end of Jan.,and I assume he still wants to repeat the EMG like he said before the MRI became available. What else could this be?  I've been to a good psychiatrist as asked who says that there is no evidence of somatization disorder--I have something wrong with me neurologically.  What could it be? What's next?  The consent for the MRI form that I signed stated a look for MS. Does this mean that "they" would also look for anything else suspicious? I've been through so much this year.

[Lulu54]

This is such good news on the medical advancement front for all sorts of patients who need imaging but have an ICD.  Thanks for sharing your update - now for the hard part .... waiting!  

Be sure and get a copy of those pics if you didn't already!

be well,
Lulu

[vanvechten]

First, with the doctor's orders of scanning both the brain and spinal areas, they programmed the scanner to avoid the heart area. Then, they adjusted the pacemaker settings to certain levels --I think those that would require the least from the device so as to reduce its power.  Most any pacemaker implanted after 2003 is"eligible."  He also explained that the tissue that surrounds the device provides adequate protection along with the adjustments they make. An added bonus for me is that their machines are huge-made to accommodate persons weighing 500 lbs!  I had NO claustrophobia! It truly is a good place--no wonder it's one of the top 10 in ratings. Worth the 8-hour drive for us.

[Lulu54]

This is such good news - can you give us more details of what they did to your ICD and your MRI's that put them into the safe range?  

Here's hoping you get some news out of all this.

be well,
Lulu