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Ambulance ride & Possible Lupus

Feb 17, 2010 - 1 comments







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February 10, 2010 I went to see my neurologist in Davis, Ca, a 2.5 hour drive for us. My husband was being seen that day, too, as a new patient because of a recurrent benign brain tumor that is causing new symptoms. We are quite the pair!  

I love my neurologist and although I hate the drive it is well worth it and I know that now more than ever. I have met some very rude neurologists in the past, some have said such shocking things that it'll make your head spin.  One who was supposedly an MS specialist was holding up my films that identified lesions in the brain, cervical cord, and thoracic spinal cord, and as he was holding them up to the window he said, "Well,I think what your main problem is that you need to lose a little weight and go on anti-depressants".  What an ignorant statement considering how much they now know about depression in MS & other autoimmune or neurological diseases.  I just read that some clinicians now believe that a major depressive episode could be considered an actual flare up of the MS and they are learning more about it all the time, there is much more to learn about autoimmune disease in general.

Anyway, my current neuro is a gem. I had a great one before who I appreciated so much but he left town to start up an inpatient stroke program at a hospital and I was devistated when he left because I knew how hard it was to find a good one. Then I met another quack and was stuck with him for the time being because I had already met all the others in town and there was no way I was going back to them. One of the previous quacks actually fell asleep in the exam room while I was explaining my new symptoms! LOL too funny, well, not at the time since I had just had an ER episode that was quite scary and it was important to me to get to the bottom of it.  I had been in the ER with major tremors of the upper body along with severe pain, I was in so much pain that I was resorting to lamaze-type labor-breathing to get from one minute to the next. My whole upper body was in tremors but they were big ones, I remember trying to scratch my face but my arms were jerking so hard that it took minutes for me to accomplish the task.  I was released after about  23 hours , it was the weekend, and they said my neurologist refused to come in and they couldn't do anything else for me after having given me IV morphine for hours for the pain. I was scared and concerned about going home, they said to see my neurologist on Monday. When I saw him on Monday I was better, the tremors were smaller and the pain was lessened, and of course he didn't see me at the worst of it all but he had the nerve to say to me, "Perhaps you just slept on your neck wrong".  Hmmm. Like I didn't know the difference between a neck kink and what I went through?  Sheesh. Some of these guys just make my stomach churn thinking about them!  He said, "MS doesn't cause pain".  Years later the MS society put out a booklet titled, "MS & Pain" so I would have loved to have walked into his office with that but I had fired him by then already.  

Well, I've been through the ringer with the neuros but I'm now happy, just wish I didn't have to go so far. For awhile I kept a local one in case I needed something urgently tended to but kept the out of town one for my follow ups. But then during a few acute flare ups I had to wait over 6 months to get into the local one, then they canceled the appointment and it literally took 10 months between calling them with an acute uncomfortable situation until they could get me in and  I decided it just wasn't worth it anymore. Plus their office staff was rude but that was probably because they hated their employer!  I made the decision that the one who was out of town was good enough and cared enough to treat me so he was worth the 2.5 hour drive (one way). Of course it makes for a very long day when I do go but he is also willing to talk to me on the phone, allows me to get all my labs and films done locally, and has said if I ever need to get in sooner he's more than happy to squeeze me in. So far he has wanted to see me every 3-6 months anyway so it's been a pretty good arrangement. He is very smart in his specialty and also dabbles in anti-aging and other things and he is very knowledgeable about other autoimmune and rheumatology issues. When he feels something is above his knowledge base he is not afraid to admit it and has sent me to a couple different specialists referrals so I respect that.

He acts like a real, regular person, not someone who is above us.  Never was that more evident than last Wednesday, February 10, 2010, when I had a very scary episode of some sort in his presence.  I was just sitting in his exam room while he was starting the new patient info on my husband first, I was to be seen for my regular follow up when they were done. I was very weak that day and had trouble standing at the lobby desk even with my cane, I just didn't feel right but have had a lot of spells like that at home, too.  Then while sitting in the exam room I just said, "I don't feel well" and I had been trying not to say anything in order to get through my hubby's appt because I was worried about his condition, too, but I just couldn't be quiet anymore, something was very overwhelming. Suddenly my heart started flip-flopping , it felt like a fish out of water on top of my chest, I became very sweaty, the doctor rushed over and helped me to the examining table/bed. He listened to my heart and called for his staff to get a b/p machine then he told them to call 911. I didn't want to go to the hospital, I was concerned about how much it would cost and I was convinced it would end up being nothing and they'd just say "go see your doctor" like every other ER experience of my life. I had a few of those in the MS diagnostic process and I knew how ERs worked, I was determined to never go to the ER again unless I was bleeding to death! LOL! doctor was awesome. He held my hand, rubbed my arm, my upper back, was reminding me calmly to breathe while taking control of the situation. When he told the staff member,his office helper-man, to call 911 the helper said, "well her color is good!" ( I had been very flushed on my face and arms before the appt even) the doctor said, "Mike, Just do it!!!" in an abrupt tone so I knew he meant business!". I felt silly going to the ER and I told the paramedic that nurses make lousy patients and he said paramedics make worse ones! He then said, "Did they tell you what your BP was when we got there? It was 176/151, you ARE GOING TO THE HOSPITAL!" so, no more arguing :).  I went, my heart rate was irregular and rapid for hours and the bp stayed up for hours but it eventually started coming down. It was one of the most uncomfortable things I've ever felt. I normally have low blood pressure so that was really high for me and the heart beat thing, ugh, just felt awful but not painful but I did have an ice-pick poking sharp intermittent pain that felt like someone was stabbing the chest wall from the inside out. As suspected, all my labs were "normal" and the ER doc said he ruled out the life threatening concerns of a heart attack or blood clot and that my potassium level was fine so he didn't think he could do anything else and suggested I follow up with my regular physician. Big surprise lol. Not!  I felt silly and wished I didn't go, BUT, I realized that my doctor was very concerned and of course he didn't want me to face a 2.5 hour drive home that day without being further evaluated so that was smart of him.

Both he and the ER doc did say that if I do end up having Lupus, as currently suspected, that it could most definitely cause that type of episode. So we'll see. In the mean time I am very happy with my medical team, which includes my general physician (who is also an internist), my neuro above, and my pain management specialist, who is a Physician's Assistant but he is awesome.  I went through a lot of years of rude, ignorant quacks but I'm finally being watched by a great group and an even greater husband.  I went through a quack of a husband before, too, but that's a story for another day ;-).  

I probably exceeded my character limit. Hmmm. But this is a journal and I don't even know if anyone else will be able to read it. I'm just glad I'm at home in my own bed and well enough to type all this out and that even though I did not want to go on that ambulance ride it made me feel lucky for every day I'm not in a hospital bed!  

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434278 tn?1324706225
by karajo, Jan 13, 2013
I know your journal is now 3 years old.  I am curious if they ever concluded that you also had lupus on top of MS?

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