MS Life

Note:  If you’re new to the thread, please read the oldest to the newest blogs to get a real feel of the blog.  The newest is on top so start at the bottom.

This week started with a bang.  I believe I told you that I’m going to see a new neurologist.  Meanwhile, I do have a script from my regular neurologist for an MRI of the cervical and thoracic spine to see if anything else is going on.  When making an appointment witht the new neurologist, I asked about the scripts.  They told me to go ahead and get those done and bring them in.  I thought that was a good idea.

I scheduled the MRIs.  They can’t be done at the same time.  The first one was yesterday of the cervical spine.  It was a closed MRI.  I call it the tomb where your whole body is enclosed in a tube.  These are better than the open MRI’s for accuracy, I’m told.  I don’t mind having MRIs.  I’m not claustrophobic.  My only concern is that I would have a myoclonic jerk while in there, but I was lucky.  I tried staying alert and not allow myself to drift off into a relaxed state which is when the jerks have a tendency to occur.  Everything went well until it came time for the gadolinium shot.  That’s what they put in you to show if any of the lesions are enhancing which would indicate either a new lesion or an active lesion causing trouble.

I am a terrible stick.  I have no veins that are easily accessed.  I used to have great veins, but over the years with numerous hospitalizations and what have you, they are now hiding out in various corners of my anatomy away from the offending needles.  If someone tries to catch one, it rolls away from them.  Yesterday, after three attempts to get one of those veins, the technician was about to give up when she decided she would use a very tiny needle and attack my hand instead.  That was very painful and not only that, because the needle was so small, the gadolinium just sort of slowly oozed up.  Then the vein said, “uh uh, that’s enough,” and ran away from her.  I thought, oh no, another stick.  But she went and checked with the radiologist and he felt that there was enough in me.  We speeded off to the end of the thumps and grinds of the machine and voila, I was done.

The next one is on Thursday for the thoracic spine.  The technician told me that she would forewarn them about my reluctant veins and put the best sticker person on my case.  Sheesh.  I always come out with bandages in several places when there has to be injections of one type or another or taking blood.  I drive hospitals crazy as well as office people.  If you want my honest opinion, I think they don’t tie the tourniquet tight enough.  Even the technician I had last night said that that was a difficult thing for her to learn to do.  I mean, I would rather my arm loose it’s circulation for one easy stick than to have to undergo multiple sticks each time.  So each time I go in, I tell them to tie the tourniquet tighter. 

I wonder if the lymphedema doesn’t help?  Something I should check into.  Think about it.  If my blood is being blocked in my legs, perhaps that is part of the problem!  I will have to ask my internist next time I see him.

Today is Wednesday.  I’m scheduled to see my psychiatrist this morning and finally get the right dosage or prescription for my depression, which of late, has been acting up.  Then I need to see if I can spread his visits further apart.  Unfortunately, he is not in my Blue Cross Preferred Provider list, so Blue Cross doesn’t cough up a dime.  At $250.00 a shot, he’s expensive, but I won’t give him up.  He’s great.  Then of course, tomorrow the second MRI.  So it’s a busy week with medical stuff.

I feel a sense of relief knowing I will see a new neurologist at the end of the month.  I assumed just because the present neurologist was the head of the MS department at the hospital and was leading all these studies into the therapeutic drugs, that he was the best I could have in this area.  I was wrong.  So let me reinforce my feelings about the right neurologist for you and me.

If you get a neurologist who doesn’t look at you and is typing away on a laptop while he listens to you.  Run.  Half his mind is on what you’re saying so he can get it down and the other half is on working the computer.  What you want is his full attention.

If you get a neurologist, like mine, who has an assistant who does everything for him including asking the questions on symptoms, running you through all the various tests to check your progress, dispensing the RX’s for medications and virtually doing all that the Doctor is supposed to do, RUN.  These neurologists get so accustomed to having everything done for them, that when they come in, they don’t seem to know anything about what you’re currently going through except throught he mouth of the assistant.  So when he comes in, he thinks he knows everything he needs to know already and his position on the subject is, “what can I do for you?”  That’s what he asked me each time.  Why didn’t I see this sooner?

I think I was being a snob.  I had the top neurologist in the area after all.  Who was I to question his technique?  The clincher for me where my rose-colored glasses were smacked off my face was when I went in this time to find that his assistant was on an extended Maternity leave.  This left him with a temporary assistant who didn’t do even a third of what his real assistant did, and left him to struggle with the real me.  Once in there, it was like he had never cracked open a file on me.  He as much as admitted that.  It was then he started to question me about everything that had happened since I first met him in 2004.   He kept asking me to get this or that record to him etc.  I told him he already had those, but he couldn’t find them in the chart.  I knew they were there, but if you flip through the chart as quickly as he did, he wasn’t really paying attention to what was in there.

Find a neurologist who listens, who gives you his undivided attention.  Who when you meet the next time, seems to have at least some recollection of you and your case.  Find someone genuine who seems to care and wants to help you.  Neurology is not a practice where you just take blood pressure  and order tests.  Neurology is almost like a psychologist visit.  You are there to converse with him about everything that is going on.  He needs to take the time to listen, ask questions, and provide possible solutions to your problems.

Be careful who you choose, and if you find out like me, that the neurologist you have is not good enough for you, don’t be afraid to move on until you find the right one for you.

Take care of you for me.

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