In ICU

I'm so sorry, Sharon. Have they ruled out a "simple" retinal detachment?

No, they aren't even looking at my eye...the head is fine, now they want to disect my heart! ��

They are trying to get me to take the full list of cardiac meds because they have found an anomaly (the same murmur that I have had since birth?) And want to drug it into submission...they are trying to put me on BP meds when I am normally at 120/60 with a HR of 60....I tend to low BP...if it drops any lower (it's at 110/70 right now) we won't be able to find it...I drink 2 pots of coffee and eat salty nuts just to get it this high...no bad cholesterol...but they are pushing cholesterol drugs...they are shooting me up with anticoagulants so my stoma is now bleeding...

Get me out of here before someone kills me with medical kindness!

Please tell me if I am being unreasonable about asking for detailed responses before gobbling all of the drugs that they want me to take in the name of "standard protocol ".

Sharon 

Sounds horrible Sharon, like you don't have enough to cope with!  I hope it settles down and they get you back on your feet soon.  I would normally says your in the best possible hands, your docs know medicine and you much better than we do, but as you specificallys ask for ideas...

Are you diabetic? Have you found coordination difficult lately or a bit of weakness?  I believe neurological issues can be quite common in people with auto immune disorders and some of the symptoms wouldn't really show on us (cramping, diarrhoea, tiredness) Peripheral neuropathy or something like that? I believe it's a long term issue that's usually well treated.  

It's even possible to have a 'mini stroke', that's not necessarily terrible news  either as the brain is quite capable of healing itself out even mapping around an affected area.  Having one is not indicative that another is to follow either.

That would probably explain both symptoms and the point is they have a good outcome.  Hopefully you are able to relax and the docs identify the issue asap.

All the best

btw my post and your most recent post 'crossed'. I was typing when you replied.  Sounds like your having a tough time in there.  It's hard to say don't listen to the docs but wow.. I think it's reasonable to ask for evidence before they operate on your heart 

Thanks bobbish...

No diabetes...glucose is perfect...actually everything is except for the incident...no signs of stroke or TIA...no diarrhea, cramping, weakness or excessive tiredness...(if you were 1/2 as active as me you would be exhausted!)...I eat healthy (please, no one mention the ice cream to my doctors!)

I have an 85% veggie diet and eat no fried foods or fast foods...it all looks great on paper...

My vision is back just fine and I am off of all pain and nsaid meds...

My pouch is bored but happy. 

Waitingfor my Italian Erasmus student Intern to try and figure out the French terms for what is or isn't wrong with me.

Someone please jailbreak me out'a here.

Sharon 

Ha at least you kept your sense of humour.  Glad your feeling better.  AFAIK neurological symptoms are very hard to locate, maybe it just passed, or maybe you just overdid it.  Even something like sugar imbalance can cause funny issues sometimes

Once when i was about 15 i just passed out... fit and healthy, no reason for it.. never had before never have since (im 42 now)  guess body just decided i needed a reboot.  

Could be...I am still waiting for the doctors to do rounds but it is a long weekend here and things are very slow...

Onwards and upwards...(or is that the airforce? Or the proctologists?)

Sharon 

Could this be a migraine syndrome? I've had migraines that interfere with vision for about 1/2 hr. They can cause arm numbness/tingling and a bunch of other weird symptoms. I used to think that migraines affected the head, but have since learned that they affect the blood vessels in the entire body. 

Rose

Very possible...they have told me that it is one of the possibilities...

Thanks 

Sharon

Sharon, I was going to suggest what Rose mentioned. I have chronic migraine, sometimes symptoms other than pain, like blurry vision, fatigue, mood changes, vertigo. My MRIs were clean. I hope everything clears up for you as quickly as it came on.

Sharon, so sorry to hear this. So here is the deal. If you exhibit symptoms suggestive of impending stroke, then they must follow standard protocol, as the risks of "wait and see" far outnumber the risks of treating. This buys them time to rule things out, do further diagnostics, and move on from there.

Of course, you should know exactly what you are being given and why, but sometimes you need to just let them do what they need to do.

Hopefully, this just turns out to be something minor, but what is being done does not sound out of bounds. I hope they wrap this up quickly and let you back out on your own. Just remember, you went there for a reason.

Jan

very sorry, hope you are feeling better.

Thanks Jan, everyone.

Friday morning at rounds we made an agreement;  after the cardiac CT and the arteriography, if all was clear then I could escape.They wanted to give me a weekend pass and get me back Sunday night but I wasn't having it.

The results were perfect, nothing to report and the Halter results came in just in time...there were a couple of Asystoles during the night but that's it. So they released me on my own recognizance! My exit package includes the report and a prescription for a bible's worth of cardiac meds...I will take the aspirin.

As the daughter of an RN I learned that the doctor knows best...and generally, I am a good listener (although my brain is going 1000miles/hr while they are speaking)...so I was relatively (for me) sedate and cooperative with them.

I just have problems with the 'just in case' drugs...not sure about back home but here they give you Heparin shots daily when hospitalized along with the aspirin against the possibility of stroke so adding Coumadin on top of that was way over the top for me...I have enough medical issues, I don't need someone telling me, 'oups, sorry but that wasn't needed and it has caused a nasty side effect'

I am home now, on my sofa (in a +90° heat wave with no A/C) (it was worse in the hospital...Really no air there) and grateful for the fan...Today I get to make appts for all of my specialists... I am not sure about the meds though, I am taking the aspirin...Can I wait to take them? 

The report shows nothing except suspicions of and possibilities of...

I guess I just got myself a free full body work up and a week off of work (although I would have preferred the beach).

Just a side note...the numbness on the outside of my left hand and in my baby finger is still there...hubby thinks that maybe all of the I.V.s in the hand might be the cause so I am waiting but doubt it...it is the residual numbness from the 'attack' on Monday. That is what reminds me that it was real and that I must take it seriously.

Sharon

Glad you are back home and survived all that medical attention. Sadly, sometimes we just never find out what happened. The good news is that we live through it and can resume our lives.

Reminds me of the time a few years back that I was hospitalized for sepsis. No cause found. I am still here.

Jan

Thanks Jan, 

Am lining up appointments for all of my specialists as per orders, not taking the drugs (I was at my pharmacy yesterday...asked about the beta blockers...Told him my BP is normally 110/60 with 2 pots of coffee in me when stressed and he told me that I should keep far, far away from them)...I will end up passing out from low BP...my heart rate was a steady 60 with dips down to 50 and all other indicators (glucose 4.1, O2 sat at 90 (low but that's me) were great...They did extensive blood tests and the bottom line was that I am chemically perfect (the only part of me!) ...

The only thing off is my thyroid that is at the bottom limit but clinically acceptable...but after being shot up with iodine 2xs for CT it will be just fine

They are very preoccupied with the Ehler's Danlos (thankfully I have a recognized specialist now who sent them the file)...that had them running in circles...one particularly rude cardiologist who played the 'you are not here and I can't see you' game for 20mins"...when he finally read the file started asking lots of questions, gave me some very good info, took my hand and spent 20mins doing research for me trying to find a type 6 specialist in hyperlaxity  (there aren't any here, only the type 3 vascular kind) and promised to research it for me).

Seems that it is the orphaned disease flavor of the year...I was told to contact the telethon for info (not a bad idea)...

I am resigned to never know but am glad that everything was clear and normal...

Now to go back to apt hunting...I have to move in 3 months and so far have nowhere to go!

Sharon