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What were your symptoms? (Read 3652 times)
Heide
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What were your symptoms?
Oct 9th, 2005 at 6:20am
 
I am new to this board and I apologize if this has been addressed before, but I am very interested in knowing what symptoms those with MM had prior to being diagnosed and approximate age.

I began having symptoms soon after my pituitary mass removal in 2001.  These included intermittent numbness/weakness in extremities, visual changes (blurry spots, stars, inability to focus), a "wooshing" sound in my ears (apparently the blood trying to pump thru the blocked ICAs), major loss of hair volume, especially on sides (from lack of oxygenation?), memory and speech dysfunction, and then of course I get the most excruciating headaches you can imagine.

Are these pretty much the typical symptoms for this disease?
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shgr
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Re: What were your symptoms?
Reply #1 - Oct 9th, 2005 at 3:22pm
 
Heide,
Welcome to the board and to your new family. ;Grin Sorry to hear you have MM, but you have found a fantastic support system and source for information.  Smiley

Prior to my stroke I began having terrible headaches with auras.  I had numbness/tingling in my face and in my left arm/shoulder.  After my stroke, which finally got me to a doctor, I had significant numbess/weakness in my left arm, hand, shoulder and neck.  These were my only symptoms...seemingly so minor that I didn't see a doctor until my left hand became too weak to hold anything!  Neurological symptoms can seem so benign!  Your symptoms sound quite typical for MM.
Hope this is helpful, Wink
Stephanie
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Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all. Dale Carnegie
 
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Heide
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Re: What were your symptoms?
Reply #2 - Oct 9th, 2005 at 8:44pm
 
Hi Stephanie and thank you for the welcome  Smiley I am sorry to hear you have had to suffer with this as well. Did you have the STAMCA bypass as well and how is your recovery from your stroke?

I know what you mean about not taking these symptoms too seriously. I don't know about you, but I was always under the impression strokes happened to the elderly, and most of us are not that old, and many are children  Cry I suffered with my symptoms for a year and I just kept attributing it to postop effects from my pituitary surgery. Of course it didn't help that I went to several neurosurgeons about it and they kept saying it was migraines and prescribing pain meds. But when they became more frequent and the headaches were truly unbearable, by that point I had suffered two lacunar infarcts. I am very fortunate that the damage doesn't seem to be permanent, but now I am having those symptoms again, even after bilateral STAMCA. At least this time I know what is going on and will have to be very proactive in my treatment!

This board is fantastic and I am so grateful I stumbled upon it! I wish none of us needed it, but it does help to know we are not alone.
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shgr
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Re: What were your symptoms?
Reply #3 - Oct 10th, 2005 at 9:04am
 
Heide,
You have been through so very much with your pituitary surgery and then MM.  I cannot believe that you have had the by-pass surgeries and are having symptoms again. I am so sorry to hear this.  I am also sorry to hear that your headaches are so terrible.  How do you treat them now?  Did you say why you think your MM is returning or your by-passes didn't work?
You asked about my stroke recovery.  I have residual numbness and weakness in my left shoulder/neck and my left hand. Also, I did indeed have bilateral by-pass surgeries in earlier July (2005).  My recovery has gone well so far, with the exception of some TIAs and a few minor seizures.  My terrible headaches remain. Cry

Remain proactive and informed, Heide! You sound very on-top-of-everything! Bravo!
lots of hugs, Smiley
Stephanie
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Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all. Dale Carnegie
 
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shgr
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Re: What were your symptoms?
Reply #4 - Oct 10th, 2005 at 9:09am
 
I had to write you and tell you that your pistures are wonderful.  Who is Priscilla?  She is absolutely adorable!
Stephanie
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Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all. Dale Carnegie
 
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Heide
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Re: What were your symptoms?
Reply #5 - Oct 10th, 2005 at 12:18pm
 
Hi Stephanie!
Priscilla is my beautiful granddaughter  ;Grin

I am not really clear on exactly why my bypasses failed, but the best the only explanation I got was that my basilar arterial system had compensated for the lack of blood flow to the ICAs, and that by the time I had the surgery, because the basilar system worked so well, the blood flow just never really re-established itself well enough to keep them patent, although they did work well the first year following the surgery.  Does that make sense?

I am sorry to hear you are having horrible headaches as well.  I have to take prednisone 15 mg day to keep the inflammation down, and when I still get a headache despite that, I have to resort to morphine which I hate taking b/c I basically turn into zombie mode and sleep  Sad
Do you have to take any meds chronically for your symptoms?
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TllR
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Re: What were your symptoms?
Reply #6 - Oct 10th, 2005 at 2:36pm
 
Hi Heide,

Welcome to the MM site. My husband was diagnosed just this year, June 1, 2005. His one and only symptom was severe debilitating migraines. He did go unconscious twice because of the pain level. The only other symptom was just about a week before his surgery he also started to get some numbness in his hands.

We were very fortunate for him to have only those few symptoms.

Terry
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Emily
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Re: What were your symptoms?
Reply #7 - Oct 18th, 2005 at 9:11am
 
hi! sorry for me tearing through this board - i just got out of hospital today after a week of tests and being diagnosed with MM which i am still blown away by (and possibly in denial!)
i'm 23, started having serious symptoms about 4 weeks ago (well actually i had "blurry-eyed" headaches for the past 6 yrs but no one's sure if they're related)...
my first symptom was actually a stroke (yay) i lost the feeling and use in my right hand and then had a blurry right eye, trouble breathing and swallowing and then slurred speech and difficult finding words for things (completely stereotypical but did i go to the doctor - no!)

this all lasted about 15-20 mins and then the symptoms subsided, i was exhausted afterwards but then all my functions returned (afterwards i assumed this was a TIA but noope apparently the permanent damage is visible from a stroke older than 14 days)....
i then had the same thing happen 3 days later, only over a 5 minute period (hand then speech "gone").
then i had some time "off", assumed it had just been a "momentary" lapse of something.....and ignored it....
within another week or so i was having a lot more frequent symptoms, often losing the feeling and/or use in my right hand, arm and then leg (the final straw was a "fall" after losing the feeling and use in the entire right side of my body for a few minutes.
[i had been to the doctor at one point and i'd had some sort of US to my neck (doppler something) which had shown nothing)].
decided to just walk into the emergency department and i'm glad i did!!
several doctors examined me and found nothing but weren't willing to let me go.... had a CT scan - nothing, had a Lumbar Puncture (ouch!!!) - nothing, kept me overnight and scheduled an MRI for a few days later... during this time i told my story to about a million staff members in the neurology department and the general vibe was that i had some crazy strain of migraine... (i was pretty much over the whole hospital deal by now and gee-ing myself up to go home).
eventually had my mri, they took one look at it and bounded back upstairs and informed me that i wasn't going anywhere - i'd had several strokes....
to which i obviously lost it!!.... and then we went on to discuss possible causes etc....
eventually came the cerebral angiogram (i've noticed people mention they've had these post-op for check ups? no..... please say it isn't true?) - this was awful.... mine took 2 hrs, and i dunno... just the sensation and being in a head clamp and having to not breathe and lie so still...... ugh... i'm pretty tough but i kinda lost it toward the end....
anyway, sorry so the over-load... i'm going to tear through as much info as i can now...
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