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1491159 tn?1288411875

Complicated Diagnosis

Hi,

I am a 39 year-old female.  My mother is a diabetic and I was born with spina bifida occulta in the lower part of my spine. At age 6, I was diagnosed with Type 1 diabetes.  As an adult, I was diagnosed with bipolar-disorder; and, am compliant with medication, attend therapy regularly, and am in remission.  I am scheduled for Adult ADHD testing.

I was in a car accident in May 2010 and was diagnosed with a severe concussion.  In July, I fell on concrete stairs in the rain and had a large contusion on my buttocks and trauma to my back, but no fractures.

I have had strange vision problems, severe headaches, constant nausea, memory problems, balance problems, dizziness, language aphasia, neck pain & stiffness, and shoulder pain since the accident.  These conditions have been worsening.  The shoulder pain has been intermittent for several years.  I have also experienced constipation and do no usually urinate until after 4 pm, but these two problems have been occurring for several years.

I also have a type of genetic thrombophilia and take warfarin sodium and low-molecular heparin, alternately.  CT scans were done three times after the car accident and all were normal.

I was referred to a neurologist for the headaches and (nn-contrast)MRI's were done of the brain and the spine.  [I do not know the magnification.]  A small lesion was found on the brain, but not in an area consistent with MS.  Syringomyelia was diagnosed in the area from C7 - T2.

Although my symptoms, with the exception of the headaches and the vision problems, can be explained by my other various medical conditions, my neurologist has referred me to an MS specialist for more testing.

My retinal opthamalogist ran tests to check my visual field and to check for macular swelling.  The next step in diagnostics is a lumbar puncture and CSF test.  I am also scheduled to establish care with a neurosurgeon in case the Syringomyelia becomes worse.

Should I request a higher-magnification MRI and a contrast-dye test if my doctor doesn't include them in my treatment plan?  Also, are there any other suggestions you can think of for me to include in my overall health plan?  (Part of my treatment includes a woman's therapy group for people with chronic health problems.)

Thank you.
:)
5 Responses
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1491159 tn?1288411875
Thank you for your helpful information. I have done a LOT of reading.  There is another, rarer, genetic disorder that is being looked into.  Hopefully, there will be an answer in my future.  I appreciate all of the support.

~C
Helpful - 0
1045086 tn?1332126422
CSF testing isn't definitive for MS.  Unfortunately, nothing is at this time.  LP fluid analysis can only provide reinforcement for a suspected diagnosis.  The presense of O-bands in the CSF that aren't also present in blood drawn at the time the lumbar puncture is done are more indicitive of MS than elevated proteins.  That test is usually sent out to a speciality lab and results aren't available until several weeks later.

As you must have noticed, Quix is very willing to help new people sort things out.  Sometimes we do overwhelm her and she goes and plays with mice for a while.  It looks like your question got past her.  If you send her a message and direct her here, I'm sure she will give you some direction.

You have written up a detailed and direct presentation of your health history.  I hope you are able to find a cause and solution for your headaches and vision problems quickly.

Mary
Helpful - 0
1491159 tn?1288411875
(SEE ABOVE, LONGER POST
I could have a spinal cord impingement due to the SB, which could explain the Syringomyelia; Diabetic Neuropathy can't be ruled out; I have been exposed to both HSV 1 and 2 and I take Topimax for the headaches which can cause side effects similar to MS symptoms.

Any advice?? (Dr. Q, Where are you?)

This all makes a diagnosis seem impossible.  Can CSF testing be definitive in a diagnosis?  I know that lactose and lgG are the two things "they" look for, but that's about all I know
Helpful - 0
1491159 tn?1288411875
Hi,

Thank you for the well-wishes!!  Actually, I feel quite fine except for the headaches.  Nothing is debilitating and I can do normal activities.  Everything re: the possibility of MS was discoveed quite accidentally while searching for a cause for the headaches and vision issues.

I will surely let you know what the doc's find.

Best to you!
Helpful - 0
738075 tn?1330575844
Hi, and welcome to the forum.  What a story!  You have my admiration already with your coping with all that's on your plate!

I understand Syringomyelia can cause lots of spinal symptoms, but it will be interesting to see what come of your testing in the next few days/weeks.

Keep in touch...
Helpful - 0
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