scared and confused

[Ninki5853]

Got results from brain MRI yesterday and I am devastated!   He said no Chiari!   Brain atrophy!   Will be doing spinal tap in a couple of weeks.  My question is.....do I ask someone else to read this MRI?  I have all the symptoms  of Chiari, even took a bad fall and hit my head before this all started.   He thinks it might be early onset dementia or Alzheimers!
please advise. ....i'm scared  I'm only 62!

[selmaS]

  There are a few different MRI scans to be done....of the brain, cervical spine, thoracic and lumbar spine, then a CINE MRI to check CSF flow.....

All these scans are important to see just what all is going on as Chiari never seems to come alone....we can have multiple conditions going on and a syrinx in the spine is one, while we can also have Ehlers-Danlos and that can be indicated by a few DX's....CCI, ICP,disk issues,baslar invagnation,retroflexed odontoid.....

I wish it was not so involved but it is, and to make sure things do not get worse it is important to know ALL related conditions you may have.

[Ninki5853]

Me again Selma,
After the Waldenstroms diagnoses and brain injury......
I still think I have Chiari!  The brain scan was just that, a brain scan.   There are only 3 pics on CD.  Can't see my new primary care Dr. till July.  What  is the actual scan I need to have done?

Jeannie

[KerriC1]

My thoughts and prayers are with you.

[Ninki5853]

They are just going to monitor my
blood every few months.   Have so many questions for hematologist  also need to get back to neurologist for all results.

[Ninki5853]

Thank you, I need all the prayers I can get!

[selmaS]

  I am at a loss for words....but am sending prayers your way.

Good luck with the cat scan and keep us posted on your progress and what your results of the Cat scan are.

[Ninki5853]

Thought I had posted this yesterday.   Selma, I had the nerve study done.  Also with the brain testing it turns out I had a serious brain trauma when I fell @ work in 2012!  Just diagnosed with this...My speech is of as well as my balance.  This has gone untreated for 4 years.   I will be going after Workman's Comp  considering the hell they have put me through.   The sad news is they also diagnosed me with a very rare blood cancer called Waldenstroms macroglobuinemia.  There is no cure.  Devestated to say the least.  Having full body catscan tomorrow to see how far it's spread.

[selmaS]

  I am glad to hear that you've calmed down....and your Dr is ruling things out.

And I am very interested to hear about the cognitive brain testing....never heard of anyone else having one done....what is all involved etc...???

I had a nerve study...EMG....not a fan of it, but it is important to have done as it can rule things out too....

Looking forward to the results of all your testing.

[Ninki5853]

I had the spinal tap last week.  This week I'm having a 4 hour cognitive brain test and Thursday the Neurologist is doing a nerve study.  Hopefully  will have some results soon!  I've calmed down too.  Just thinking he's methodically ruling things out.

[selmaS]

  If your INS requires a referral you will need to go thru them....if not you can contact a Chiari specialist for review of the MRI.

The DX they gave you brain atrophy has symptoms of seizures that is why I asked.....

[Ninki5853]

I've never had a seizure.  I don't  have a copy of the MRI, but will get one.  I'm not sure how to get a second opinion.  Do I check with my insurance?

[selmaS]

  Hi b4 you get even more stressed out then you already are.....have you had seizures?....

Do you have a copy of the MRI?

I would suggest getting the opinion of another Dr.....and wait to see what  you find out.