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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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ER refused to treat me

starlily88

Senior Member
Messages
497
Location
Baltimore MD
I am just catching up on this thread and am so sorry for everything you have been through @starlily88! I have also had experiences where the doctor told me that I must go to the ER and then you get to the ER and they treat you like human garbage as if you just showed up for fun to waste their time. I totally understand avoiding the ER at all cost.

This thread has been educational for me b/c Hopkins has such an amazing reputation. I'm on the west coast and have no direct experience of them but I had a nightmare experience at Stanford a few yrs ago (which also has an amazing reputation) and you just never know how you will be treated anywhere. The hospital where I see my MCAS doctor and do my infusions is the most random hospital but is phenomenal so you just never know.

I am glad you will see the Endo and hoping you get some answers. Am also glad you will consult with your attorney friend re: how to proceed.

Forgot to say - so sorry about the bad time you had at Stanford. When I first started getting dehydrated, my dr sent me to Hopkins ER. It was all GSW's (gun shot wounds) The cops had their very own little office in there. I waited 12 hours - I grabbed a cop - told him if they didn't start a line in me, I was going to be unconscious - so they did start line in the hallway.

I got taken to a private place where they treat only Diabetic, CFS/ME type patients - we stay there for under 24 hours so it is not charged as inpatient, then they wanted me to get meds similar to Zofran, can't remember. I told the Social Worker this was too expensive, on disability.
She walked me across the street to a pharmacy, got the script filled for me, and charged it to Hopkins:woot: They were so great to me - the dr and nurse came in constantly, had pain meds, hydration, etc.No nurse has ever been mean to me that works at Hopkins - I think they get paid a lot, they are all very high quality - they are different from the nurses they hire at the suburban hospitals.:rolleyes:
Starlily88
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Starlilly, I had to tell you that I went to the ER last night due to going off of steroids. I am so sick. I was and have been on them for over 5 months. I was on medrol and felt so sick. Went off of it. In general I hate steroids.

Yesterday I went to the ER and was so ill and crying and unable to breathe. I told them I could not go on like this anymore and I was sent to a psychiatric hospital for evaluation. I was put on a gurney or stretcher where I was strapped in, couldn't get up and went by ambulance to a crisis ward.

I was let go two hours later and that was it. I needed help with anxiety, pain and going off of steroids..instead, I was held for 8 hours for a psych eval.

YUP...you are not alone.

Assholes.
 

sissypop

Senior Member
Messages
194
Location
USA
OMG. I am so sorry for everyone having experienced this. I went through a similar experience with the ER and it's so soul destroying. Mine wasn't as bad as some here. But it affected me greatly, still does. Even the way they look at you with such disgust. Like how dare you come in here faking being sick.

OMG I'm so sorry everyone. This breaks my heart.
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
Starlilly, I had to tell you that I went to the ER last night due to going off of steroids. I am so sick. I was and have been on them for over 5 months. I was on medrol and felt so sick. Went off of it. In general I hate steroids.

Yesterday I went to the ER and was so ill and crying and unable to breathe. I told them I could not go on like this anymore and I was sent to a psychiatric hospital for evaluation. I was put on a gurney or stretcher where I was strapped in, couldn't get up and went by ambulance to a crisis ward.

I was let go two hours later and that was it. I needed help with anxiety, pain and going off of steroids..instead, I was held for 8 hours for a psych eval.

YUP...you are not alone.

Assholes.

OMG Misfit Toy - that is so awful. That is a nightmare:sluggish: and disgusting that no one listened to your symptoms from the steroids:eek: I had no idea you were on steroids for over 5 months. Wow, that is long time - and of course you got the terrible side effects. As soon as you said you couldn't go on like this - trust me I have said this in the last week to my ENT - who immediately wanted to send the police to my place - unbelievable how no one as sick as us gets that this is an expression of unending frustration from being sicker than we are - from a long term med.

I am praying that you are at home, away from the a-holes - I have no idea how one gets off of steroids - they do make you not sleep, anxious - unable to breathe:nervous: that is horrible - maybe that made my asthma worse:aghhh:

After all this sharing - I think all ERs should be seen as danger zones. How is your anxiety now?:alien: Not kidding but worried that after all that stress, and stopping the Medrol - you are still feeling ill. I feel so badly for you - i would have totally freaked out, and had a panic attack. They did exactly the opposite of what you needed - to be less anxious, less pain. I hope you have a Klonopin around or Valium, and any kind of pain med. I keep these on hand for when I have paradoxical reactions to drugs.

Please let me (us all) know how you are doing:). Thinking of you, what I went thru is nothing compared to you, so sorry - it sounds like you went thru a horror movie.
Starlily88
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
OMG. I am so sorry for everyone having experienced this. I went through a similar experience with the ER and it's so soul destroying. Mine wasn't as bad as some here. But it affected me greatly, still does. Even the way they look at you with such disgust. Like how dare you come in here faking being sick.

OMG I'm so sorry everyone. This breaks my heart.
Sissypop - even in fall 2017 I was taken care of ASAP - with asthma attack - but the head dr was there, he knew my internist, knew me - so I guess I was just lucky. What happened? If what you went thru affected you greatly - it is like you have PTSD - and how can you ever go to an ER again? Sorry it was so destructive - but I noticed that all the older nurses with a lot of experience were all gone when I was there.
starlily88
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
I am just catching up on this thread and am so sorry for everything you have been through @starlily88! I have also had experiences where the doctor told me that I must go to the ER and then you get to the ER and they treat you like human garbage as if you just showed up for fun to waste their time. I totally understand avoiding the ER at all cost.

This thread has been educational for me b/c Hopkins has such an amazing reputation. I'm on the west coast and have no direct experience of them but I had a nightmare experience at Stanford a few yrs ago (which also has an amazing reputation) and you just never know how you will be treated anywhere. The hospital where I see my MCAS doctor and do my infusions is the most random hospital but is phenomenal so you just never know.

I am glad you will see the Endo and hoping you get some answers. Am also glad you will consult with your attorney friend re: how to proceed.

Gingergrrl - I wanted to PM you, but you have it off - so I was reading about MCAS - I was taking Zaditor for allergic conjunctivitis in eyes. In oral form this is Ketotifen - do you take this? I just started taking Atarax to help my situation because it seems like allergies - it seems like I am allergic to everything just in my place.

The Ketotifen - is this a mast cell stabilizer and used to prevent asthma attacks? It seems like my trouble breathing, swallowing, constant allergy symptoms - could be MCAS. Is the only dr to test this in states Dr. Kaufman?

When I go to Hopkins if I mention MCAS - are they going to think I am crazy? do only a few drs recognize MCAS?
Thanks a lot. I can't eat any food - no protein, no veggies, etc. I react terribly to them.
Starlily88
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Star, they had me go up to 2 mg. I am doing awful on it. Prednisone makes me feel drugged. Like exhausted. I feel so tired on it. No one listens to me, believes me. I am made to feel crazy. "It gives you energy, it doesn't make you tired."

I can't focus at all on it. I am so tired of this. I have adverse reactions to everything. I am anxious because I am not getting the care I need. I need help and literally NO one has been there. My rheumatologist is by way of email, but I need more care than that.

No one gets it and I am sick of it.

My doctor is away and the endocrinologist says the adrenal tests are not in yet. Even if they were in and it said I had adrenal insufficiency, I can't take these medications. Plain and simple.
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
Star, they had me go up to 2 mg. I am doing awful on it. Prednisone makes me feel drugged. Like exhausted. I feel so tired on it. No one listens to me, believes me. I am made to feel crazy. "It gives you energy, it doesn't make you tired."

I can't focus at all on it. I am so tired of this. I have adverse reactions to everything. I am anxious because I am not getting the care I need. I need help and literally NO one has been there. My rheumatologist is by way of email, but I need more care than that.

No one gets it and I am sick of it.

My doctor is away and the endocrinologist says the adrenal tests are not in yet. Even if they were in and it said I had adrenal insufficiency, I can't take these medications. Plain and simple.

To Misfit Toy. I have paradoxical (opposite) reactions to many drugs a dr puts me on, and of course they don't believe me. My neurologist always yells at me when Lamictal makes me break out in hives. "no one else does"
She will never get that many people get sick from Lamictal, and I am not most people.

Although I felt "great" on Prednisone it was only 12 days. The last 4 days - I did get the wired feeling, insomnia, so much energy I was entering the mania zone. If I continued on Prednisone - I would have continued to NOT sleep - creating huge anxiety (extra epinephren in brain makes one speedy), no concentration due to a mania type phase.
This "speed" to my body uses a lot of energy due. That makes me so tired but speedy at same time.

I get you are anxious because you are not getting the care you need. I am in that state of mind, or was, until I realized that I had to do it myself since I have exhausted all my dr's help, which was zero.

I called my ENT, my Neurologist- to demand help. I realized that no one was going to help me because it is a mystery. We all get it - and we all feel your pain. No one could ever 'get this"

I really feel your pain - since March 21st I am running a fever, allergies, asthma suddenly. My internist just dropped Medicare patients as of April 1st - so after 25 years I don't have him. I am so scared just like you because we do think the worst, and unfortunately many times are correct way before a dr tells us.

You know your body the best - you have to be the first line of action right now - although it would be great if your Internist was not away. I can't tell you medical advice - but if MEDROL is source of this horrible side effects - titrate down - slowly - use a razor to cut pill into bits. Steroids and anti-depressants can't be stopped cold turkey so try to titrate just a tiny tiny bit. I don't know why you are on Medrol - so perhaps this is vital for you, but not vital when the side effects destroy your life.

I don't advocate doing anything without dr's help - but I have been in your position many times - and just researched how to get off a drug safely.

I think this past Friday taught me that there is no one doctor there for me anymore - like when I had my surrogate Dad (surgeon) helping me and my friend ENT at Hopkins one phone call away. When I had horrible things happen, they were a mere call away, and saw me next day.

Those days are over for me now- no family taking care of me. Now I am merely a nuisance.

If you had an Internist or GP - this is the time to call - but you said they are out of town? Most have backups when they go on holiday - so there is a chance to call the dr on call.
When I get desperate - I go to Urgent Care - they have 2 women who are so kind, knowledgeable, and have done more than any dr combined so far for me.

Thinking of you - most important thing is to get anxiety down - hopefully by sleeping. I have meds to help me sleep.
Starlily88
 

Gingergrrl

Senior Member
Messages
16,171
Gingergrrl - I wanted to PM you, but you have it off - so I was reading about MCAS - I was taking Zaditor for allergic conjunctivitis in eyes. In oral form this is Ketotifen - do you take this? I just started taking Atarax to help my situation because it seems like allergies - it seems like I am allergic to everything just in my place.

I am going to ask the moderator to turn PM's back on for me and I had them off for a few months while my mom was dying of cancer b/c I just literally could not keep up with them.

To answer your question, yes Zaditor is Ketotefin in eye drop form and I use the drops 2x/day and find them very helpful. I have not had any problems wearing my contact lenses since starting these drops and it eliminated a more expensive eye drop prescription (vs. Zaditor is OTC and I just order on Amazon).

I also take Ketotefin (since mid 2015) as a mast cell stabilizer. I was taking 4 mg per day but now only take 2 mg per day. Atarax is my rescue med (since I do not do well with Benadryl) but I no longer need it for that purpose and only use it as a pre-med for IVIG.

The Ketotifen - is this a mast cell stabilizer and used to prevent asthma attacks? It seems like my trouble breathing, swallowing, constant allergy symptoms - could be MCAS. Is the only dr to test this in states Dr. Kaufman?

It is definitely 100% a mast cell stabilizer, and I would imagine that it could be used for asthma but I would confirm with your doctor and I don't have asthma. And Dr. K is not the only doctor who can test for MCAS. I have an MCAS specialist, who is local to me, and he is an allergist/immunologist. I can give you his name via PM but not sure it would help since you are on the opposite coast and he is no longer taking new patients.

When I go to Hopkins if I mention MCAS - are they going to think I am crazy? do only a few drs recognize MCAS? Thanks a lot. I can't eat any food - no protein, no veggies, etc. I react terribly to them.

I have no idea if Hopkins has a clinic or specialist to treat MCAS. They are few and far between. I really only researched my state (CA) and there is my doc for LA & Orange counties and then the next closest specialist is in San Diego. And then a few in No. CA. Maybe someone on the east coast might know the answer to this. @Misfit Toy has posted about seeing Dr. Maitland who I believe is in NY.
 

Runner5

Senior Member
Messages
323
Location
PNW
I was having trouble breathing, turned out it was my flonase nasal spray for my allergies ( I think...) I believe I'm allergic to the stuff. It's very scary when you can't breath properly. It felt like my throat was closing up.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@starlily88 - I am so sorry about you losing your doctor. That is traumatic. I mean, traumatic. My doctor takes medicare. I do not even know what I would do. What a completely awful situation. To me, that is traumatizing. My doctor prescribes so many things that no other doctor would like my thyroid medication.

Correction-i was on prednisone for months, then they switched me to medrol and then back to prednisone. I went off of medrol abruptly a week ago. I started feeling awful, but I felt crazy on medrol.

BTW, I was on lamictal years ago for anxiety. The first thing my psychiatrist told me at the time was, "It may cause a rash, look out for it." Well, for me it didn't cause a rash, it caused a feeling of blah.

I am not too far from you, btw. I am right on the border of Delaware. Not far from Philadelphia or Wilmington, DE.
 

Gingergrrl

Senior Member
Messages
16,171
It's very scary when you can't breath properly. It felt like my throat was closing up.

I agree and not being able to breathe was the absolute lowest point of my entire illness AND then having random doctors not believe you as if you are making it up. Still infuriates me. Is your breathing better now @Runner5?

@starlily88 - I am so sorry about you losing your doctor. That is traumatic. I mean, traumatic. My doctor takes medicare. I do not even know what I would do. What a completely awful situation. To me, that is traumatizing. My doctor prescribes so many things that no other doctor would like my thyroid medication.

I agree and the thought of losing my main doctor or my MCAS doctor puts me into a state of pure fear :nervous:. Neither are ever allowed to retire without my consent ;)

BTW, I was on lamictal years ago for anxiety. The first thing my psychiatrist told me at the time was, "It may cause a rash, look out for it."

I agree and I have never actually taken Lamictal but in my career (before I got sick), whenever any of the docs would prescribe Lamictal to a patient, the #1 thing they would tell them is to look out for the rash, which if it is SJS, can be life threatening. How bizarre (and stupid) of that doctor not to know that!
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
When I go to Hopkins if I mention MCAS - are they going to think I am crazy? do only a few drs recognize MCAS?

Most doctors are completely ignorant regarding mast cells - they only think about mast cells in terms of anaphylaxis, angioedema, and hives. When a person doesn't have those symptoms, they have a very steep hill to climb.

Many or most of the symptoms you mentioned can be caused by mast cells. Fever isn't discussed much in the mast cell research literature, so I did a search on Lisa Klimas Mast Attack website:

There are some additional symptoms that I have observed in a large number of people that are not classically considered mast cell symptoms, but I now firmly believe them to be. One is fever.

Here is an answer to your question, "Do only a few doctors recognize MCAS?"

Often seen, rarely recognized: mast cell activation disease--a guide to diagnosis and therapeutic options.
Afrin LB1, Butterfield JH2, Raithel M3, Molderings GJ4.
https://www.ncbi.nlm.nih.gov/pubmed/27012973#
Abstract

Mast cell (MC) disease has long been thought to be just the rare disease of mastocytosis (in various forms, principally cutaneous and systemic), with aberrant MC mediator release at symptomatic levels due to neoplastic MC proliferation.

Recent discoveries now show a new view is in order, with mastocytosis capping a metaphorical iceberg now called "MC activation disease" (MCAD, i.e. disease principally manifesting inappropriate MC activation), with the bulk of the iceberg being the recently recognized "MC activation syndrome" (MCAS), featuring inappropriate MC activation to symptomatic levels...

[T]he great heterogeneity of MCAD's clinical presentation is unsurprising. Most MCAD patients present with decades of chronic multisystem polymorbidity generally of an inflammatory ± allergic theme.

Preliminary epidemiologic investigation suggests MCAD, while often misrecognized, may be substantially prevalent, making it increasingly important that practitioners of all stripes learn how to recognize its more common forms such as MCAS.

Full text available Here.
 

Runner5

Senior Member
Messages
323
Location
PNW
My breathing is a little better but it's not 100% yet, I kinda thought I was imagining things at first - I have a bad GI so I figured -- okay it's just the nausea that's causing this.

I don't know, my symptoms have been all over the place lately and much much worse. I was hoping it was just an allergy to Flonase because it can cause shortness of breath.
 

Gingergrrl

Senior Member
Messages
16,171
@Runner5 I love your new avatar!

In my case, I had three completely different types of dyspnea/shortness of breath. One was autonomic from POTS and triggered by standing/walking, one was allergic reactions from MCAS, and the third was due to autoimmunity causing muscle weakness of my diaphragm which stopped me from inhaling a full breath.

I never had asthma, or any obstructive lung issue, which is the first thing most doctors look for and then stop looking. At present, I no longer have any shortness of breath unless I manage to trigger a severe POTS episode.

How are you feeling today @starlily88? Hoping you are doing better.
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
I got appointment with internist On May 31 2018 - in a private group.
I know one great dr in the group - she has given me referrals years ago.
It's a large group - only 3 of them take new patients.

Luckily I got appt with the internist that specializes in Endocrinology.
I don't know how I am going to last - I am feeling worse, getting chills with my teeth chattering, plus earache.
:thumbsup: Good news for me Starlily88