At what point should I consider ER ir... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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At what point should I consider ER ir Doctor.

SoulRebel-APS profile image
10 Replies

Hi, as some of u may know I have a strong dislike for ER's. Especially the ones available to me. I got sick about 3 days ago. I have had some of the worst abdominal, back and kidney pain then ever before. It stated as the flu from ****. Now I having a lot of pain from my neck, mucsles and possibly viens/arteriers the area of my neck just above my shoulders to my legs especially the abdominal area, kidneys and back. No reall fever that im aware of. But some good pain and just feel awful. Sleep alluded me most of the night just pain. Anyway since I do have APS my husband has been tryng to get me to go to ER. But I hate to go just to be told I have a nasty flu. I have had more than my share but never this bad. And the neck pain is just weird and the kidney pain seems odd with the flu. I have been having some problems with stroke the last few months ive had at least 5 good strokes in the last few day months and am not sure about the symtoms of clots in neck or kidneys. In my late teens and early 20's I had problems with kidneys so I know kidney pain when I feel it. Basically I am asking ur opinion on what I should do. My inclination is to wait it out but im bad about not going for treatment when I should. I never have gone to the ER for a stroke. I wouls rather let it pass in the comfort of my own home then a cold ER. But I know there have been many times when I should have gone but to stubborn. Plz let me know what u think. How long I should wait for it to get better. Oh, one more thing I am on pain meds. Today I have taken 60mg morphine and 10 of oxy as well as tylenol and still hurtn this bad, but the pain meds never take the pain away just take the edge off. Any input would be appropriated. Thank u

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SoulRebel-APS
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HollyHeski profile image
HollyHeskiAdministrator

If this is a new set of pains, you need to be checked out. I think you know that by asking the question - even if it does end up being a form of flu (which it doesnt sound like with no temperature), you would have peace of mind. Hope you feel better soon

SoulRebel-APS profile image
SoulRebel-APS

Sorry I did miss word that I have had 4/5 TIA's in the last few months. They do pass the longest was about 15 minutes before I started getting feeling back on my left side and face stopped straightened up. Within 25 minutes I could walk again although the weakness carried and brain fog carried on for a few a couple weeks. The others only lasted 5 mins of less. Very sorry for the poor use of words. But no I don't go to the hospital for TIA's in most cases they would be over before getting there. I do know that this is not necessarily appropriate and want to say to others who may read this. DO NOT TRY THIS AT HOME.

SoulRebel-APS profile image
SoulRebel-APS

Also, sorry. Thank u for the advice.

Wittycjt profile image
Wittycjt

Get to an ER ASAP. A full blown stroke maybe occurring this time...

Fra22-57 profile image
Fra22-57

It's better to be safe than sorry

MaryF profile image
MaryFAdministrator

If you are feeling as bad as you are, I would be seeking some medical help if you body is reacting very badly to flu, you still may be needing the GP to manage this, as when we have an autoimmune disease, our systems can react in an unpredictable manner. With Regard to your TIA's, your anticoagulation needs a review and the GP needs to be part of this, including making sure you access the right specialist. Any new symptoms need to be investigated including your kidney pan. MaryF

GinaD profile image
GinaD

Regarding your dislike of emergency rooms: I agree with the above post that given your current situation you should go to the ER; in fact I hope you already have. Do they have non-critical walk in treatment centers in your area? In my area we call them "doc in the boxes."

If so, then you might consider "making friends" with one of them by providing them with detailed information about APLS and your diagnosis. That may not make them experts, but if you come in with the strange symptoms they will probably not dismiss you out of hand as a nutcase but with more likely look at your symptoms within the context of possible coagulation issues.

And if you don't have a "doc in the box" in your area then on a day when you're feeling good you might try setting up a similar file/procedure with your local ER.

Ask to speak to an administrator or someone in management, smile real big, and explain that you are a "zebra" and you'd like to use their facility in an emergency, but you do have a poorly understood condition and you would like to make sure their files on you are up-to-date. And smile again and ask, "so how can we do that so that I can continue to be a customer?" And you might add "I have some friends with autoimmune conditions and we're really looking for an emergency facility that can comprehend and treat our difficult conditions. "

blizzard2014 profile image
blizzard2014

I hate having to go to the ER and explain what APS is to the doctors. None of them have any clue of what I'm talking about. Also, if my INR is just barely 2.0 at the least, they claim it's therapeutic and send me on my marry way. They won't even entertain the thought of giving me Lovenox until it is back up to 3.0. I don't even bother with the ER unless it is really bad. In your case, I would at least want a D-Dimer test to see if there are any active blood clots in your body right now. When we have APS, sometimes getting the flu, or an infection can trigger clotting events. It can even trigger catastrophic APS. This disease is also known for attacking the kidneys just like SLE Lupus does. I would get checked out just to be on the safe side, even if it means you have to explain the disease over and over again to ignorant doctors. I hope you're feeling better.

HollyHeski profile image
HollyHeskiAdministrator

Its 2 days since your post-how are you?

SoulRebel-APS profile image
SoulRebel-APS

Hi everyone! I posted a should I go to ER post about two weeks ago about being sick an in a LOT of pain asking at what point i should go to ER. Several hours and many replies urge me to go. The pain started to get better, so being be I decided to wait n c. I continued to slowly get better i did not experience TIA's of the brain that I was awarare of any way. I am still having some on and off symptoms but the majority of the pain has passed with some residual, which for me is to be expected. I am sorry to say. I did not follow your excellent and probably correcrt suggestions of going to the ER. But I am doing much better now and will talk to my PCP on retesting kidney function as well as properly testingh my thyroid. Not the TSH levels. Im sorry I didn't take ur advice but I did start getting better that day. I want thyroid tested because tyical weight gain, exhaustion, memory issues and extremely dry skin that I can do nothing about. Beleive me I have tried many things. I had brought up the possiblity of sjrens syndrom to my rhem. But he discounted it because I didn't test positive to the antibodies, though I beleive there are people with sojrens that test negative. I have dry mouth, eyes and ugly dry skin so will talk to pcp about proper thyroid testing. Again thank u for your time and suggestions. I will try to make myself go next time I an questioning whether or not I should. That thought alone usully means yes u should. Thanks again. Home u are all doing well. Happy Holidays

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