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GladGirl

Idiopathic Hypertrophic Pachymeningitis - Very Rare

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Hello, I have not been here for quite awhile basically because of my health issues.  I was diagnosed with Celiac Disease 3 years ago, but it took a very long time in coming....and now I have developed "Idiopathic Hypertrophic Pachymeningitis"...

 

Too shorten this I first would like to say that I was having Epileptic seizures without realizing that is what they were....at one time I thought it might be Narcolepsy but shoved it off saying I was overtired or due to stress.  These were actually focal seizures that caused me to be very sleepy and lose time for seconds or minutes.  A few times I also had the more significant type in my speech..not being able to say what I wanted to and losing the ability to complete a conversation.  This last type is what my husband took me to the ER for and then everything changed.  My MRI showed a brain tumor in my left temporal lobe.  The diagnosis from the neuro surgeon there was not agreed upon by other Dr's, and we were advised by my PCP to get a 2nd opinion...hence my new MRi's, craniotomy, and new diagnosis from the Mayo Clinic.

 

At this point, being a Celiac is very important because as has been stated before; if you have one type of immune system this can trigger other immune diseases.  I will be undergoing more testing now to determine what other types of immune problems I have.  I must say I am so thankful for the Mayo Clnic Dr's who seem to be very aware of Celiac Disease including my neurologist.

 

I have agreed to be a part of a Research Program with Mayo Clinic authorizing the tissues from my tumor to be used to help other patients who may be Celiac and developing other problems.  The future tests will be in Hematology first and then from there we will proceed.  

 

I am not posting this to scare anyone.  Like I first composed on this topic...this is considered "very rare"; but yet I wanted to make sure that everyone realizes the importance of follow-up with good Dr's.  My PCP was doing the normal tests on my boodwork to check for Vitamins and minerals and of course liver enzymes and TSH, but if I had known about the seizures, perhaps that would have set her on a level of more needed testing...if in doubt...let them know.

 

Now, I cannot work, I cannot drive, and my speech and memory has been reduced greatly since some of my normal brain tissue had to be removed to resect the complete tumor.  Also, this was in my left temporal lobe which controls much of that.  The Dr's say if will just take longer for my brain to heal.  I am on Keppra, to offset any more seizures which seems to be working at this time.

 

I have applied for SS Disability, but this takes quite some time..with all the insurance changes and the higher cost of deductibles, there is much need for this to be approved given all the new tests I will have to go through.  Thank God for my husband's insurance, so far, so good, just higher deductibles right now, no higher monthly payments.

 

I know how difficult it is to find good Dr's who will listen to us, there is more and more information being sent out to the medical field regarding Celiac and other immune systems...so help is on the way!

 

Happy to be alive....Gladgirl :)

 

 

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