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NIGHTMARE! Warning: This is a LONG one

The last couple of days have been the WORST medical experience I have ever had in my life! Fortunately it has turned out that there is nothing serious going on with me. That is the one good thing to come out of all of IS only my MS that is creating all of my problems, that and this horrible headache that just won't go away no matter what anyone does.

So, to back things up a bit and make things a bit more clear......

Friday I left off with letting you all know of my impending relapse. I had finished my three day course of IV steroids and so far had not been feeling any better. Over the weekend I continued to not feel well and was starting to do worse. My memory was off, I can't remember what I did most of Saturday and my mom says I was slurring my words. I was confused and by Sunday I could not remember basic things like how to spell my son's name. I was not getting any better and in fact I was getting worse. The headache was (and still is) as bad as it had been previously and nothing seemed to be helping. Monday I called my neurologist and I was told no more steroids as I had enough and should be responding but that since I was not I should go to the ER and have them run some tests. So off to the ER I went.

Last week when I was at the ER and they started the IVSM they also did a CT which was normal (for someone with MS that is).....on Monday they did a CT and it showed what they said was a "bleed in the brain" and they were admitting me because they "think I may have had a stroke" This was at approximately 3 pm and then I did not get anymore information until 11pm. All the while my head hurts because I have this horrible headache that I have now had since the 10th and no one has done anything about it. Nice, right? NO! Not to mention that I was not given any of my regular medications until 11pm and I missed my afternoon Baclofen so my legs were spastic, my blood sugar was 67, and they put me on a low-sodium diet, which I am okay with but my potassium then dropped so I got more sick. Actually the whole time I was admitted I did not get my regular medications (it was very sporadic.....I kept asking the nurses and they would say we are waiting for the doctor to write the orders). The thing about it is that the nurses were wonderful, it was the doctors who were horrible, absolutely incompetent. If it was not for the nurses in this hospital the place would fall apart, they really are the ones keeping it running. Anyway.....So, the first day did not go good, but it was not the worst of it.

The ER staff was wonderful (including the doctors) and did all they could, were efficient and got me upstairs at 3pm. The problem was that from 3pm until almost 11pm the nurses couldn't do anything to help me because they needed orders from the hospitalist. The daytime hospitalist dropped the ball and did not get the orders to the nurse and did not come to see me. The night hospitalist had a procedure to do and so it was not until 11pm that we got any information. It was not her fault and she was very informative and helpful. She got orders in for the tests, explained that the CT showed what looks like a bleed or some kind of fluid in the brain that was not there last week. It would be consistent with a stroke or a TIA and my symptoms would be consistent with a mild stroke or a TIA but they are also consistent with a MS flare. Also, because I am on Novantrone which is cardiotoxic I am at a higher risk of a blood clot and so this could create a bleed. She ordered an echo, ultrasound of the corroded artery, EEG, and MRI/MRA. This would give a better idea of what is really going on. Plus, she said that the CT is not a really good test for looking at the specifics. All they really knew was that there is something there that was not there one week ago.

Tuesday morning they hospital staff was very efficient and I seemed to go in for one test after another starting at 5 am. The day hospitalist came in to introduce himself and let me know that hopefully he could get me discharged because he had a plane to catch cause he was going on vacation for the holidays and I would have yet another doctor if I did not go home. He then said that he would check back in on me after they got all the results. Let me tell you how impressed I was with this guy. (sarcasm, anyone) The good news of the day: they were all basically normal. The MRI/MRA of course were consistent with my typical MS stuff. And, I did NOT have a stroke or a TIA.....what happened is that I happen to have a lesion in the left side of the brain in an area where the spinal fluid enters the brain (or at least this is how the local neurologist explained it to me.....then again, this is the same neuro who said my MS did not make sense to her, and so I was referred to my current neuro in Seattle....I'll get to that in a minute). Anyway, that lesion has calcified. Apparently because of the calcification and the location of it on the CT it looked like a bleed. The doctors in the ER very much did the right thing to admit me and recommend the work up and although it was very stressful and scary to think I may have had a stroke, I am glad they were on top of it.

After the local neuro gave me the results of the various tests, she did an exam and talked to me for a bit. She told me that all my lesions are on the left side of my brain and that this just does not make any sense to her because I have marked weakness and quite a bit of numbness on my left side and that should not be happening and so there is nothing to suggest anything to do with my MS is causing my problems. I told her that my neuro in Seattle talked to me about how we can have damage that does not show up on the MRI (invisible brain damage) and she rolled her eyes at me and said "okay if you say so but that does not make sense medically and your MS should cause problems for you on your right side not your left".....this is why I started going to is difficult enough to have an illness like this and to have various symptoms from day to day, but when you have a doctor who does not support you or that questions you when you can feel it.....and she can see it even with her neuro exam.....that only makes life harder! The best thing I have done in regards to my MS is start seeing my current neuro. She is a wonderful neuro who specializes in MS and I would drive back and forth to Seattle every day if that is what it took. Actually I am going to Seattle on Wednesday to see her for a follow-up and hopefully she will be able to figure something out about my headaches, or refer me to someone who will know.

Anyway, that was a little off the subject....sorry about that. So, after the local neuro left, the day time hospitalist came in and told me that I had one of two options. I could stay the night and they could give me something for the headache or I could go home and they could send me home with something. I told him that I did not get any sleep because I have this horrible headache and even though they give me meds nothing seems to be helping. As it is a hospital, everytime someone walks by I would wake up and so I thought I would sleep better at home, and I would probably be more comfortable at home as well. Next we talked options. He said he was thinking about Loratab.....why do doctors love this medication? They always want to give this for pain? Anyway, I told him that I can't take Loratab because I have NASH and we talked about the fact that I also have GERD so I can't take anything with Ibuprofen in it. I tried really hard to talk to him about my medical history and he did not want to hear it, he was nasty about it and everything I said he tried to argue about. He said he wanted to give me this injection of an advil type of medication and that even though my GI doctor would tell me not to take it, it is not a big deal, all GI docs say that but really it is safe because it is an injection and not a pill. I said okay, and told him how I get nausea really easy and would probably need something for that as well as I have had a lot of nausea and the pain meds make that worse. He said that would be important because if I have nausea and throw up then the headache will only get worse. He then told me they were going to add a blood pressure medication for me to take at bedtime. I don't have high blood pressure or anything but it will hopefully help to release some pressure in my brain and relieve the headache.

After all of that.....the nurse comes in to discharge me with what else, a RX for Loratab. What the hell was this doctor doing? My guess would be he was so busy trying to get out of the hospital and to his plane that he was not really listening when I told him I have a LIVER condition and CAN NOT have that! So the nurse calls him and guess what he says...."I am getting on a plane, she will just have to take it anyway, it won't do that much damage" My question is did this doctor even read my medical history? Does he know I have liver damage, GERD, cancer, and MS? I am on chemo, severely immunosuppressed, and he wants me to just take something knowing that it will do damage because the damage won't be that bad. What kind of doctor is this? So, the poor nurse is trying to help out and get me a new RX but there is not another doctor to sign for it until, get this.....9 pm. It was 5pm at this point. So, we had to wait until 9pm for a new RX. At 9pm when we got the new RX, instead of just giving us the RX the night hospitalist (yet one more doctor who I have never seen) comes into the room and says "I am doing you a courtesy by writing this prescription, I didn't have to do this" Hello....I am not discharged from the hospital, she is on-call, so technically I am her patient. This is not a courtesy, this is HER JOB! This really pissed me off. And, it pissed off my mom. She then said consider yourself discharged you can leave and got us a wheelchair to leave. This is the thing, she was trying to discharge me without having anyone even take out my flipping IV. What kind of doctors are these people? I have NEVER in my life had such a horrible experience.

It was as if the nurses did all the work and they did a great job but the doctors were ineffective and inefficient. In all 13 years of working in the medical field and all the years I have been a patient I have never seen anything like this. My mother actually called and filed a formal complaint today with the hospital about the two doctors from yesterday. They didn't even give me enough medications to make it through the holiday and the anti-nausea they gave me is something that the pharmacy said can only be filled with a cancer diagnosis (why they gave that to me I don't know....granted I have NHL but I am in remission and yes I am on Novantrone but I did not just have a treatment.....I tell you these doctors have some serious issues) so I had to go in to the doctor again today so they could get me a different anti-nausea medication so I could take the Morphine that they gave me. Needless to say I was able to get the anti-nausea that I needed and I have taken the meds so if I sound a little loopy....that would be why! Sorry about that. :)

I do still have a headache. I am planning on a trip to Seattle next week to see my neuro and hopefully she will be able to refer me to someone who specializes in headache problems....or maybe she will have some magic trick up her sleeve (she really is that great!) The Morphine helps, but it does not take it away completely and it is only a temporary fix. It makes me feel funny so I don't want to do that for long. More than anything I just want to feel okay again. I am SO tired of being sick.


Baitulos said...

And I thought MY life sucked right now!?! What the hell??? Sounds like things clearly went from bad to "badder", to "baddest"!

I am so sorry for your ordeal...sometimes I HATE doctors, but even more so, I HATE MS. You hang in there the best you can, kiddo, and try to enjoy what's left of your holiday!

Linda D. in Seattle

Suzy said...

Oh gosh Jaime, I am so sorry for how badly you were treated and how badly you are feeling. This sucks! It's just not fair....I just read on Brain Cheese about Linda not doing well and now your story only adds to my sorrow. Please take it easy and take some deep breaths....I know, easier said than done, right? Dayum doctors....sometimes I just wanna say....well you probably already know what I'd like to say.
I'm hoping your headache goes away and I'll be praying for you the rest of the week. Please take care of yourself.

Jami said...

Wow! Whenever I have a bad day, I'm going to remember this post and know I have it GOOD!

Sorry about all you've been through, but it sounds like things can only get better:)

Jami in Phx

Charles-A. Rovira said...

Oh my god!

That has to be one of the worst stories about the most inept medical staff I have ever read about.

Then again, I can't claim to be really surprised. I've run into some people who got into medicine for reasons other than talent or aptitude.

But what a mess they've made of it, and of your treatment.

I'm sorry but you're confirming an opinion. "If you want to stay healthy, keep the hell away from the whole medical racket."

mdmhvonpa said...

Cripes ... by the time I got to the end your post even I had a sympathy headache. Take care. Have a better TDay.

Jaime said...

I keep telling myself it can't possibly get any worse, right? You sure have not had it easy either. I am right there with you....MS SUCKS! I hope that you are doing better. Please take care of yourself.

Jaime said...

I think that doctor only added to my headache. Some people just should not go into certain jobs. As Linda would say...I'm just sayin'

I am going to see my neurologist soon and I am sure she will be able to figure something out to make me feel better. In the meantime I have Morphine and Tigan....which I don't really like the way I feel on but they help me sleep.

I hope you and your family are all doing well. Take care.


Jaime said...

Welcome. Sorry to have to meet you under these circumstances. I think we all have bad is how we make it through I suppose. I hope you are doing well. Take care.

Jaime said...

I have always gotten very good medical treatment and worked in the medical field for 13 years before I got sick. I know many people in the medical field who have gone into it for the right reasons and who have made a real difference. I know many physicians who really care for their patients and MD/PhD's who are their not only for the patient care but for the science, the research.

I was amazed by the horrible care that I got, and although I have seen the negative side of the business, the political side of the business, I have never seen one doctor who really had NO business being in this business. I believe there are some people who get into it for the wrong reason (the money) but do a good job, or people who are very good at it but maybe don't have the best bedside one is perfect, or the ones who get into it for all the right reasons and as they get older they get tired. This doctor was young and clueless!

I don't think that your statement that if you want to stay healthy you need to stay away from the medical field is correct. Of course there is not really a need to go to the doctor if you are healthy with the exception of regular check-ups, but you should go if you notice a problem. It is not healthy to ignore a problem. Had I ignored some of the warning signs I had, my cancer might not have been caught as early as it was.

The medical field is very important and these doctors are a vital resource, it is just important to make sure that the doctor you are seeing is creditialed and board certified. That they don't have complaints agaist them and that they know what they are doing. Unfortunately when you are an inpatient in the hospital you have no control over that.

Sometimes I guess there is only so much we can do, eh?


Jaime said...

Sorry about that! I hope you had a great Thanksgiving as well. Take care of yourself.

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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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