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Putting Together The Medical Puzzle

Hi Everyone,

I need help.  I have to become a detective and put together the pieces of a puzzle that seems to be a mystery.  Basically I am an episode of HOUSE without an egotistical Doctor who can't live until he figures out the answer.
So lets get to it.  
1.  I gave birth to a little girl who was Anencephalic (no brain or back of her skull)
2.  I gave birth to a little boy with Spina Bifida, Hydrocephalus, Chiari Malformation and a host of other problems.
3.  My third pregnancy was a miscariage.
4.  I became ill around the age of 21 when I started to suffer from sever migraines.  I also had a bad case of shingles on the left side of my back.  About a year later I was relaxing at home after a long day at work when I suddenly was overcome with horrific pain that I can only describe as nerve pain.  Its like a lightening storm in my body and the lightening strikes move around.  I guess the best way to say describe it is to have someone turn a cattle prodder up to 10 and just poke you over and over in multiple places.
5.  I have double vision
6.  I have Chiari Malformation that was decompressed in 1999.
7.  I have a slit like Syrnix (Syringomyelia) at c5 - c7
8.  I had psoriasis covering my body until I went through my Chiari decompression and within 5 days of the surgery every flake and sore was gone.  
I did very well after my Chiari Decompression, lost a hundred pounds and became an avid ballroom dancer.  I exercised all the time.  It took 11 years and many test and doctors to finally be diagnosed with Chiari Malformation.  They told me I had Epstien Bar, then they said MS, then they said I was just depressed because my children had such dramatic medical conditions.  When my daughter died they literally dismissed all my symptoms to depression for along time.  Now my son is 23 and doing very well and I have two healthy daughters as well.
The last several years I have been going down hill very quickly.  
1.  I have two different sized pupils that they tell me doesn't affect anything.
2.  I have a persistant trigeminal artery that although rare is benign as well.
3.  They tell me that my Syrnix is also benign.  
4.  I have a pollup in my left lung that they also say is not causing any of my symptoms, but they will follow it.
I was diagnose with Myastenia Gravis in 2013 but am seronegative which means I have the symptoms but the bloodwork comes back negative.
I am exhausted all the time, I lose my voice easily, I choke on food (which I always attributed to Chiari) My right eye droops dramatically, but my new nurologist thinks my MS is well under control.
In Feb I was put in the hospital for 6 days because I lost control of my right side including facial muscles and voice for several days.  They were convinced I was having a stroke, but I knew it wasn't.  
I had a MRI in 2013 that reads:  s/P subocciptal decompression,
cerebellar Tonsils may be a few millimeters below the Foramen Magnum.
Single Patch of ABN T2 Hyperintense Signal In White Matter of R Posterior Frontal  Nonspecific
Basilar Artery is ery small
Persisntent Trigeinal Artery which connects to the upper basilar artery
lower basal artery is very hypoplatic, perhaps nonexistant
no aneurysm, Atherosclerotic stenois or AVM

This is a list of the symptoms my adult son has written down:
drooping eye
loss of voice during day/ after ten to 20 mins aof talking.  Sometimes wakes up with no voice depending on how good of a nights sleep she got.
extreme exhaustion after doing one physical thing. (Said thing can be very small like blow drying her hair)
double vision
weak limbs - very little strength
trouble breathing after simple activites
difficulty swallowing
facial and hand twitching
goes from freezing to hot in short amount of time
nerve pains
unstable on feet
chokes all the time
needs constant assistance doing activities.  If she is very weak, che cannot move.
Esophagus spasms
trouble holding up neck
muscle spasms
diziness
ear infections
extremely watery eyes
swelling of hands, feet, legs and face depending on how tired she is or how much sleep she has had.

My doctors don't believe that my Myasthenia Gravis accounts for my pain, my extreme exhaustion and does not affect one side of the body only.   So when I went to the hospital my right side was non functional but my left side was also weak.  They just think there is something else that is responsible for the extreme pain of everyday and the weakness.  Any ideas folks?  I have another MRI in Feb that I want to get the report for so I can compare the notes.  I don't understand any of what it said except for the cereberalla tonsils part (that is the Chiari).

3 Responses
987762 tn?1331027953
Hi and welcome to our little MS community,

Okay my crumpled detective hat is on but seriously, it would have to be really really rare for one person to be diagnosed with Chari malformation, Syrnix (Syringomyelia), Myastenia Gravis and MS.......wow there's already been a lot you've gone through and probably an additionally unknown condition(s) going on too, so firstly HUGS!

I'm not actually sure how your MS diagnosis came about, there's nothing really there that we usually see with MS on your brain MRI. What I did notice apart from the Chari, is 3 abnormal artery findings (Basilar Artery is ery small, Persisntent Trigeinal Artery, lower basal artery is very hypoplatic, perhaps nonexistant ) which are vascular, possibly connected to Chari but i honestly don't know, sorry.

I'm not going to even speculated with your symptoms, the last 3 on your list are definitely not associated with MS, some associated with the spinal cord  but separating things out is next to impossible because of symptoms overlap with the conditions you've been diagnosed with, so again sorry!    

"but my new nurologist thinks my MS is well under control." err okay I would definitely recommend making sure you have one of the top MS or Chari specialising neurologist working on your case, your just overly complicated with all your conditions and it would be in your best interest, to have an incredibly good neuro on your side!

I also think it would be a good idea to get an appointment to be assessed by a geneticist, i'm thinking there might be some genetic clues to help towards finding the reason behind it all.......

Cheers............JJ

PS let us know how you get on!
Avatar universal
I think I somehow posted this is the wrong section.  I was reading in an area about MRI reports and thought I was posting there.  I also have to learn how to edit post because that should have said "my neurologist says my MG is under control".  Although diagnosed with MS earlier in life they have since retracted that diagnosis.  So MG, Chiari, Syringomyelia and Fibromyalgia is what I am currently diagnosed with.  
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum,

It appears your thread was moved from the MS  forum over to this one.....

I would suggest you not only get the report from your Feb MRI but get ALL copies of ALL  MRIs you have had....along with the reports.

It is possible that you may need another decompression or that you have scar tissue that has formed since your last one....

A syrinx can cause many of the symptoms you mentioned.....

Those of us with Chiari can also have a number of other related and non related conditions and we are prone to auto immune and connective tissue disorders....

It is not unheard of  for someone with Chiari to also have MS, but I have heard of more being DX'd with MS when it was all Chiari....

I have to agree with the above poster  that you need a specialist for both Chiari and MS to review your case......

There are more tests you may want to have to narrow down what is going on.
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620923 tn?1452915648
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