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Not too Sure It's TIA's

I know you can't give a diagnosis without seeing me. My docs are sending me to Cleveland Clinic,but was hoping to find out if anyone knows what this is?
In Jan of 99 I started experiencing facial swelling on the right side only. My face swells so that my eye swells shut. I get headaches right before it happens then during.It started by swelling and staying that way for a couple of hours to maybe the whole day. Now it swells and may go down for a couple of hours or a day or 2. When it started I went to my family doc and he said TIA's,now after 9 doctors they say not TIA's. I have been on coumadin since last Jan,also been treated for facial spams by Botox injections which did absolutely nothing.Not long ago while having a headache I was pressing on the back of my head to releive the pressure,I pressed on a spot on at the base of my brain and the swelling went down. As soon as I let off the swelling returns! When I showed this to one of my doctors,he told me to wear a hat!! When I press on the spot it causes severe headaches so a hat is out.I also found that the spot on the back of my head is alittle swollen.(always)I have had 4 MRI's 6 cat scans and been admitted to the hospital 3 times to be put on Hepren.That doesn't seem to help either.Please help,I am afraid to go out anywhere for fear that it will swell and I won't be able to drive home. I was told not to drive or work but no-one seems to have any answers for me.Thank You for your time.Deena
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Avatar universal
A related discussion, TIA was started.
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Avatar universal
Dear Kelly:

I am not sure what to say.  I pain problem seems to be abdominal and the red fallopian tube would not give you upper quadrant pain, so I am not sure what to tell you. The other symptoms might suggest a central problem.  I might see a neurologist and get a full workup and likely a brain MRI just to rule out the worrisome things.  

Sincerely,

CCF Neuro MD
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Avatar universal
i am a 29-year-old healthy, active female.  while visiting my parents in early september of 99, i was feeling kinda crappy - no appetite...which is completely hard to believe with my parents'stocked fridge.  by the time i came returned home i was having a shooting pain in my side.  doc thought appendicitis but not acute enough to worry about.  told me to stick to a fluid diet "just in case".
i've had that same pain in my side since then.  no real appetite, and thusly i have lost weight approximately 20 pounds (the weight loss was sudden within about 3 weeks) although i
figure at this point i have gained about 3 to 5 back.

i have had x-rays, abdominal ct scans, a barium swallow, 24-hour urine sample, abdominal and pelvic ultra sounds, and lots of blood work.  everything keeps coming back normal or a bit off
but basically in the normal range so they don't quite know what to make of me.

then i had a "seizure" in february. perhaps a tia - no diagnosis.

i had been playing hockey all day.  four straight games in net.  (one goalie didn't show and i volunteered).  on the way home i was speaking (i was a passenger) and suddenly forgot,
midsentence, what i was saying.  i knew where i was but i was very confused.  that is to say that conversation confused me.  i just couldn't follow.  i would "zone in and out".  

i live in a very rural area and it was about two hours before i had made it to a hospital.  i was less confused when i arrived, finding it easier to follow a conversation, but still not quite right.  upon examination by the emerg doctor, i was unable to count backwards by 7s and i was unable to figure out the date although i knew the year and the month.  i was kept in the hospital for 3 days.

i was then scheduled for a head ct, which came back normal.  an electrocardiogram, a 24-hour holter monitor and a sleep-deprived electroencephalogram.  i don't have the results for those
although the techs in each case indicated that they saw nothing outstanding.

two weeks later i had such bad stomach pains one day that i couldn't move.  the pain was gradual throughout the day.  it started as the usual right-sided ache and progressed to a sharp pain each time i sat down (i work in an office and i am up and down a lot throughout the day).  at approximately 3:30 i had to walk 1/2 block and the pain became severe and hurt even more on the step.  i went to the doctor who sent me to the hospital.  the pain subsided during the hour drive as i was still.  the pain was as severe as it had been at 3:30 when i had to walk from
the vehicle to the emergency room.  i was kept in the hospital and scheduled for a laparoscopy the next day.

at this point the appendix is still being considered.  they found nothing unusual about the appendix.  an ob/gyn was called in during the procedure.  he created another opening for the lap
and noted that one fallopian tube is kinked and red, some fluid in my cervix and surmised that that must be the problem. a sample was taken of the fluid, and i was placed on antibiotics on the assumption that the culture would test positive for bacteria.

then i met the ob/gyn after my course of antibiotics for pelvic inflammatory disease and chlamydia even though the test came back negative, as did my partner's (of 6 years).
however, the doc was at a bit of a disadvantage, the first time he met me i was asleep. he asked how i was feeling, expecting to hear great things.  i told him i was frustrated and that i still have the same pain that i have had since september and i pointed to my side.  he got a puzzled look on his face.  puzzled because i was pointing to the wrong place.  he was only going on info he had seen in my chart and what the other surgeon had said.  all throughout my chart it says lower abdominal pain.  only in one spot did it say right mid to upper abdominal pain.  the kinked
fallopian tube...on my left side.

he was then sure that i had a kidney problem because the pain radiates to my back, perhaps even related to the fall i took while downhill racing (skiing) about 6 years ago(broke my ribs bruised my kidneys).  he scheduled me for an intravenous pyelogram.

then i had another evening of the same degree of pain, but i didn't go to the hospital.  i KNOW that i should have, but nothing ever happens, i keep getting these tests back that are normal and i had an absolutely terrible experience with a nurse.  i just went to bed instead.  as long as i was still i was fine.  i fell asleep and by the morning i was fine.

the next day i had an appointment to get the results of the ivp - no stones. the ob/gyn then sent me to see the doc who had performed the lap.  he did bloodwork.  sed rate - 6, normal.

this is where i am now.

here are more of the unusual occurrences in my body:

during the two "attacks" i experience pain when voiding.  not a burning pain, pain in the abdomen.  it is on the right side, mid to above my navel and radiates to my back.  i could be settled and calm but if i needed to void, that pain could bring me to tears.

sharp RS abdominal pain on a daily basis. some occurrences of shooting pain from back through to front RS.  all pain occurrences are severe.  take my breath away and paralyzing. can last from 1 second to 25.

middle finger left hand goes completely white for approximately 15 minutes.  no exposure to cold to initiate the condition.  middle toe of my left foot did it two nights ago also.

deep joint pain both hips.  more recently a pain on the outside of my right hip, thought to be bursitis by my GP.

i am experiencing apnea?  i stop breathing during sleep.  my boyfriend will find me rigid and then suddenly a gasp for air.  i feel as though i have been swimming and gone too deep.  i reach
the surface and gasp (not a dream).  my heart races as though i have just ran the dash and i continue to catch my breath.  this occurred during both of my hospital stays, in each case the
patient in the room with me called for the nurse.

left eye vision requires glasses right doesn't.  

i have the hiccups on a daily basis.  they don't last a long time.  but can come 2 to 4 times daily.

hives.

occasional night sweats.

i was perspiring a great deal - hyperhidrosis.  i am now using drysol and the perspiration had ceased.  although not the best remedy, i am much happier.

i have experienced foot cramps in my left foot.  not specific to any one activity.

my right shoulder aches as though i have been overusing it.  have just passed it off as hockey related, although even after taking a month and a half off the pain came back.

i had a 45-minute toothache the other day.   not unusual except that it moved throughout my mouth from front to back, top to bottom.

the past few days i have felt a shooting, sharp pain on the left side of my head.  not a headache, doesn
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Avatar universal
your welcome.

CCF Neuro MD
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Bev
Thank you. I really appreciate you taking the time to reply. It's people like you that restore our faith in mankind!
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Avatar universal
Dear Bev:

Certainly anything is possible.  However, the basilar artery is not a muscular artery in the same way coronary arteries are.  So, I would doubt that the same etiology is involved causing both symptoms at the same time.  

Sincerely,

CCF Neuro MD
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Avatar universal
Bev
Sorry to "jump" into a message like this, but I have not been able to get in to post my own.
I have had vertigo and other symptoms for about five years and was diagnosed with Basilar artery migraine last year. I also get chest pain (mild to severe) from time to time and didn't think anything of it until I read an article on Prinzmetal's angina. This is caused by a coronary artery spasm while BAM is a basilar artery spasm. Could there be a link between BAM & Prinzmetal's - same factor causing both spasms?
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Avatar universal
your welcome.

CCF Neuro MD
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Avatar universal
Dear Graneet:

Please, don't feel bad.  The internet is a great source of information, but not all information is correct.  It would be wonderful if Herpes 6 was the cause of MS, but unfortunately it is not a magic bullet of the etiology.  

Sincerely,

CCF Neuro MD
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Avatar universal
Thank you
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Avatar universal
Im sorry you thought this was a friend it was one of those places on the web who does medical work with herpes virus. I found on your web sight under ms a topic of the role of herpes 6 and mulitiple sclerosis. And looked up the information. That is why i asked. There are a lot of sights on this. So when i asked the question i didn't think it would be a myth. Sorry it was such a dumb question.
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Avatar universal
Dear Granett:

Tell your friend to publish is work and he will get the nobel prize as researchers for many years have been looking for the agent that causes MS.  Absolutely no data suggests that Herpes causes MS.  I have a nineteen year old young man in my office currently who has shingles.  There you go, another myth put to rest.

Sincerely,

CCF Neuro MD
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Avatar universal
Thank you for responding now having sever muscle stiffness trying to wait till things get bad enought a doc can find whats wrong.  But mean while i have a question about the connection bettween herpes virus and ms.
When i was twenty i lost a child soon after i developed shingles i didnt know what it was till i went to my doctor and he was amazed that i was so young with shingles even had another doctor look at i. It was a patch about seven inches long on left shoulder.  Now i asked someone who studies herpes to see if the shingles herpes and the one they connect to ms is the same and he said yes they are. Could you elaborate on the information you know about it. And does that predisposition a person to possible get ms? Or how does it relate to ms? Thanks for you answers i realy appreciate this web and cc for this web. You are very kind.
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Avatar universal
Dear Graneet:

I am not sure what your asking.  I think I would start from the beginning and get a good physical exam, some basic labs, and then a good neurological examination.  You need someone to look at you, combine the lab work with the symptoms that are gained from physical exam.  I am sorry that you have no health insurance, but some physician needs to be the center of the investigation of your health problems.

Sincerely,

CCF Neuro MD
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Avatar universal
I too was diagnosed with tia's
I had numbness down right side in cheek heavyness in leg but face also swell not as serious as yours however but when i had the spells i felt swelling in face and back of neck. Swelling didnt go away tho till spell left.
I understand tia's are signs of future stroke wonder if this is a givin?
Also wonder if my mri turned out clear (brain mri) why there are still lingering from time to time symptoms.  Mostly eye blur.
Wonder is there limitations now cause of having tia's
Corodid artiery test didnt warrent surgery. So what is causing tia's?
Also had facial spasms on right side. Did your doc give you any more info on tia's   thanks
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Avatar universal
Dear Graneet:

TIAs are compromises in neuronal function brought on by ischemia.  The estimates are that in a 5 year time, 50% will go on to have a major stroke, 25% will go on to have another TIA and 25% will not have another event.  Repeated TIAs occurring over a short time happen but they are very rare and mostly we see these giving rise to a stroke in a short amount of time.  Isolated TIAs occur but usually give a characteristic type of neuronal deficit (depending on which vascular territory is being compromised).  Since the MRI was normal after so many TIAs, I would find that alittle unusual.  If the TIAs were so characteristic and the symptoms lasting several hours, there should have some changes on MRI (diffusion weighted scans).  Especially in the case of the previous poster who had a years worth of TIAs.  That was leading me away from the TIA diagnosis.

CCF Neuro MD
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Avatar universal
Thank you
Im throughly confused and have no idea which direction to go.
I had an open brain mri
My symptoms have consisted of the following;
sever fatique
constant urination all night 3-4 times
facial numbness right side cheek down neck arm leg felt heavy
cramps in right leg and arm weak feeling when numbness is gone
a stiff feeling across back of neck and shoulder
lips went numb as well as under chin
felt bubble in ear which only comes when have sensations
Have had drawing in my right foot muscle
Joints in my right elbow and wrist and fingers ache when spells leave.
Have trouble thinking clearly
And a blur in my right eye always if look up or to left or right then try to focus it hurts and is blurry
Then it will clear up
Only had the full numbness twice once with a light headed feel
once with just my mouth and face
wasnt stressed
since tho now i get these head aches up back of head and sometimes sudden surges feels like blood running up my back quickly to my head.
I know you cant give diagnosis i just want to know what to ask the doctor to look for Ive spent over 3.500.00 no insurance trying to find out whats going on. Any ideas
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Avatar universal
Dear Deena:

I am not sure what to tell you.  This might be migraine variant.  It doesn't sound like a TIA to me.  It seems to related to the headache.  I would pursue the migraine angle first, and I am sure that is what they will do when your evaluated here.

Sincerely,

CCF Neuro MD
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