Life with MS & EDS

August 19, 2009

Dr. Generalist vs. Dr. Specialist

Filed under: Uncategorized — by mseds @ 12:48 pm
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Last week I had my check-up with Dr. Generalist.  I’ve not been there since I first started Copaxone about 6 months ago.  When I last saw him, he suggested that I confer with a specialist at a major hospital around here since she’d have more detailed MS-specific knowledge.  If you’ve read other posts, you’ll know that I saw her quite a lot this past spring.

So, the first thing he asked was how things were going.  I proceeded to tell him that things were going okay and that I’d gone through a round of steroid treatment back in April.  He was surprised to hear this.  I explained that Dr. Specialist thought this was the best way to go given the number of lesions that showed up on the spine MRI she ordered and given that I was having an increase in symptoms.

He was taken quite off guard.  I definitely offended him, but certainly did not intend to!  It didn’t occur to me that I probably should have gotten in touch with him during my visits to Dr. Specialist to consult with him before making decisions.  I was suddenly in the position of being stuck between two doctors.

He suggested that I either stick with him as the primary neurologist, which is what Dr. Specialist recommended, or switch to her as my neurologist.  He said that people usually have a general doctor that they see more regularly and check-in annually with the specialist to see what new research is out there, etc.  Rarely, he said, do people do it the other way around where they see the specialist more frequently because then visits with him become what this visit had turned into – a report of what the other doctor is doing.  This was rather awkward to say the least.

He offered his opinion that he probably would not have given me the steroid treatment based on the symptoms I had at the time (fatigue and tingling in my left arm and upper lip as well as optic neuritis that has been around for a while), despite the many lesions found on the MRI.  He did explain that the MRI was noteworthy because of the spread of the lesions and that their location and size didn’t matter.  I then asked the stupid question of why the lower spine was not examined, which is when I learned that the spinal cord doesn’t go down that far.  (Whoops, perhaps I should have already known that.)   Dr. Generalist said that he reserves steroid treatment for when symptoms impair ability.  He also said there are other things that could be used to deal with fatigue, such as Provigil.  I’m not ready to go onto medication for the fatigue since I’m pretty functional, but it’s nice to know it’s an option down the road.

I also mentioned that Dr. Specialist mentioned the possibility of switching to Rebif if we didn’t like the results of the next MRI.  Dr. Generalist didn’t like the sound of that idea.  He said that there’s no reason to think that the interferons (Rebif, Avonex, and Betaseron) were any better or more effective than Copaxone.  He also said that 6 months was too short to know if something was or was not working.  He said 2 years is a much more appropriate length of time.

I have a follow up scheduled with Dr. Specialist for another round of MRIs in October.  Dr. Generalist said there are two schools of thought with MRIs – one that thinks they are needed regularly to determine treatment and another that says to treat the symptoms, not what things look like on film.  He’s definitely more conservative than Dr. Specialist.  Personally, I like to know what things look like and what’s going on inside of me.  Yes, it freaks me out that my spine is covered in lesions that may someday lead to many more symptoms, but for now things are generally calm and that’s comforting.

Here I am, stuck in the middle.  I clearly have a decision to make.  I appreciate the advice and direction both doctors have given.  I feel that I’ve bonded more with Dr. Specialist and I like her “bedside manner.”  I’ve had the misfortune of knowing a lot of neurologists between myself and Little Sister.  They are brain doctors and quite brilliant people, but many of them aren’t wonderful with people.  It’s hard to find a personable brain doctor.  I feel torn and am not really sure which to pick.  They both have their advantages and disadvantages.  Thankfully I have fantastic health coverage (they both cost the same and I don’t need referrals for either), so this doesn’t factor into the decisions.  I’d have easier access to Dr. Generalist, but I think that if there was really an emergency, Dr. Specialist would fit me in as she did last spring.  I think that if I stuck with Dr. Generalist, I’d always wonder what the specialist would think, but am not sure I’d question things in the other direction.  I’m generally skeptical enough to question Dr. Specialist if I think she’s being aggressive and have my husband (definitely a skeptic, although he’d probably argue that) to ask the questions I’ve not thought of.  I think I’m leaning towards Dr. Specialist, but I guess I’ll run this past her in October and then decide if I’m going to cancel the 6-month follow-up with Dr. Generalist and part ways.

July 21, 2009

Reality

The past several weeks have been pretty decent.  I finally felt the positive effects of the lovely Solu-Medrol steroid experience.  Still being awake at 11 p.m. as opposed to exhausted by 8 p.m., not having any numbness in my left arm, and having still lips was worth it.  Never thought I’d say that!  Lack of exhaustion was certainly the best part of things.

Life has been keeping me pretty busy and certainly quite occupied.  The girls are having a great summer and we’re getting down the shore pretty often.  As a full-time teleworker, I’m fortunate that I rarely ever have to travel.  However, the past 4 weeks brought 2 unexpected trips.  One was for training in Baltimore and last week I ended up in Chicago for a great meeting (yes, surprisingly those do exist.)  It was my first time flying with Copaxone.  I put everything into that blue plastic travel case, shoved it into my laptop backpack and off I went.   At the security check-point, I unloaded the blue box along with my laptop, BlackBerry, iPod, and shoes (thanks a lot, shoe bomber, for making me have to stand where thousands of other people have stood without their shoes on – yuck) and through the metal detector I went.  As I was walking through, the TSA guard asked what was in the box and I said it was my medication.  He said I didn’t have to put that through separately.  Nice to know, but it just seems safer to pull it out than to have them wonder what these pre-filled needles are on the x-ray monitor.   I took it out on the return trip, too, although those people didn’t say anything.

Later this month we’re taking a family trip to Disney and I cannot wait!  I’m concerned about the heat as well as how much walking Little Sister will be able to do.  To test things out, we didn’t take the stroller on the boardwalk this past weekend.  She made it about a mile before she started complaining.  My husband, complete with a very  sun-burned back, had to carry her home the last 3 blocks.  This was without her DAFOs and with little stopping.  I can’t imagine that we’ll have an uninterrupted mile+ long walk while in Disney, so I think we’ll be okay.  I’ve built in break time and will arrange for shows, longer rides, etc. to split things up.

Planning these trips has been a nice diversion.  I’m also hosting a birthday party for my best friend 2 days after we return from Disney.  Having things to plan is a great way to occupy time.

Yesterday also brought great news!  When we moved here a few years ago, my work was stable, but my husband has been dependent on contracts, which have been slow coming the past 2 years.  After a bit of a drought, he got a great contract about 2 months ago.  It was fantastic to know that things would be steady for the next 6 months.  Never in a million years did we expect he’d get a call last night with an offer for a full-time job!  It’s also full-time telework with minimal travel!  We are so fortunate.

So, as you can see, things have been going pretty well.  Aside from that strange instance of vertigo and my eyesight not improving, health-wise things have been unremarkable.  I’ve been a bit more tired lately, but I’ve also been very busy.  I’d like to blame it on that and not the effects of the steroids going away.  I don’t want to do those again anytime soon.  Even my hip, which was giving me a lot of pain when walking long distances, has been great!  Walks on the boardwalk used to do me in, too, but I think the monthly chiropractor appointments are really helping.  It’s strange how being in alignment makes such a difference.

Reality has sunk in that I have MS and that’s just the way things are.  This was my primary focus for so many months.  It’s nice to have these other things to concentrate on now.  I suppose I’ve reached the “acceptance” phase.  Reality did creep up on me last night though when I was doing online check-in for the Breast Cancer 3-Day.  Phase One includes a medical questionnaire.  For the first time I had to check off “other” and put in not only Ehlers-Danlos (which was new last year), but also “Relapsing Remitting Multiple Sclerosis.”  Honestly, I don’t think I’ve ever written that out before.  Heck, I never even spell out MS anymore.  I found myself checking the spelling to make sure I had it correct before hitting submit!

May 18, 2009

Did Not Expect This

Filed under: Uncategorized — by mseds @ 4:13 pm
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Well, it looks like I’ll be seeing Dr. Specialist sooner than my October visit.  I called to talk with her nurse on Friday to ask about my latest symptoms.  My left arm from the elbow down is still getting pins-and-needles and that same sensation that was happening on my upper lip, left side, is now spreading across the lip and to the bottom lip.

The nurse returned my call on her drive home Friday night and said that she’d tell Dr. Specialist about the symptoms and that they’d look at my MRI results again on Monday morning.  I said that other than not feeling quite as fatigued, I’ve not noticed any improvement from the steroid treatment, which I finished on May 5th.  She said that it was probably still working in my body, which I thought was strange until my husband reminded me that antibiotics keep working well after you’ve swallowed the last pill, too.  Duh, that makes sense.

So, the nurse called back this afternoon and said that Dr. Specialist wants to see me and that they are fitting me in Wed. morning.  She didn’t elaborate and I didn’t ask, but I have a feeling Dr. Specialist wants to change my medication.  I’ve gotten used to Copaxone.  The shots don’t itch like they used to (except sometimes on the tummy.)  They still sting afterwards, but I’ve gotten kind of used to it and the ice does help.  I’m not sure what I think about switching, but if this drug isn’t working, then I suppose I need to try something else.  I’m not thrilled about changing to something that can cause liver damage.  My mom was just diagnosed with adult-onset Still’s Disease, which is an arthritis disease that causes liver problems, and several other family members have had liver disease, including my aunt.  This is going to be a big part of my conversation with Dr. Specialist on Wednesday.  In the meantime, I need to read up on the other drugs again.  I’m glad I wrote down what I thought of them back in December when I was doing my initial research.  It’s helpful to have something to look back on. I have a feeling she’s leaning towards Rebif based on my last conversation with her.

I’ll let you know what happens on Wednesday!

April 24, 2009

Prednisone – Day Two

Filed under: Uncategorized — by mseds @ 9:40 am
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I’m starting to feel a bit better.  My arm doesn’t hurt as much as it did yesterday.  I feel a bit more alert, although still very tired.  My mood seems more even tempered.  My senses remain  in overdrive.  Lights and sounds are still more intense than they should be.  I feel like I have pregnancy nose again, but without the nausea.  I can smell things clear across the house that I could normally only smell from steps away.  I also have the chills at the moment, but that’s not too unusual for me.  The steroids have made me so warm, perhaps I’m just slowly returning to my normal state.

I’m grateful that GG asked about the dosing times for the Prednisone.  I called the pharmacy last night.  Today I’m doing two at breakfast and two at lunch.  I think that will go far better than yesterday’s routine.  It’s been months since I was that awake at 11 p.m.!  The sleeping pill did eventually help me get some sleep until 6.

Last night I finally got out of the house for a bit.  It was my first time out since Sunday.  It was nice to hang out with a friend for a bit.  This morning I even took a drive to drop off Little Sister at school and treated myself to coffee and a soft pretzel on the way back.  Not that I need the extra food!  I’ve gained about 7 pounds this week.  I don’t feel like I’m eating too much more than normal, so I imagine I’m retaining fluid.  The MS Walk is coming at a good time.  I need to get moving!

Oh, last night my Copaxone shot didn’t go well.  I’m not sure if it was just poor form on my part, but it bled a lot more than normal.  It was in the same arm that I had the IV in and where they had given me doses of Heparin to keep the IV line open.  I’m not sure if that had anything to do with it or not, but it was very strange to see more than a drop of blood after the shot.  Has anyone else ever had that happen after a Solu-Medrol treatment?

April 23, 2009

Prednisone – Day One

Filed under: Uncategorized — by mseds @ 12:17 pm
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I’m still beyond thrilled to finally have the IV out of my arm.  My arm is still sore and I am still babying it a bit (as hubby noticed last night, I was still walking around like Bob Dole), but I’m getting better and am able to use my arm again for most things.  I certainly slept better last night and that makes a world of difference.

Today is the start of the Prednisone taper, which for me involves 4 pills a day for 3 days, then 3 pills for 3 days, then 2 for 3 days, then finally 1 a day for 3 days.  My husband found the pill sorter we have and I filled it up for a week.  It has my Prednisone, Zantac, Vitamin, and the last couple days worth of my antibiotic for my sinus infection.  I left out the Ambien since I’m going to try to go without it.  But, wow, do I feel old!  I never imagined I’d be on so much medication that I’d need something to help sort it all out.  It’s a bit overwhelming.

As for the Prednisone, it seems really strong! It has to be taken with food, so I took my first with breakfast this morning at 8.  By 9 I had that metallic taste I got in my mouth from the Solu-Medrol.  I guess I wasn’t expecting that.  It’s making me eat more than I should.  The pill made me a bit edgy and my senses are still heightened.  My next pill was with lunch.  The first one still seemed so strong that it was strange to take another right on top of the first one.  I can’t imagine what I’m going to feel like come the 4th pill today.  Perhaps I’ll need that Ambien after all.  Big Sister’s been waiting for me to start bouncing off the walls.  She may just get that this evening!

I wish I had some indication of whether steroids are working.  I’ve heard of some people saying they’ve noticed immediate improvements.  I certainly can’t say that.  My left hand is still tingly.  My optic neuritis in my right eye seems blurrier today than it has in a while, but it’s not too bad.  I can’t tell what’s going on with my fatigue.  I’m both wiped out and wired at the same time.  What a strange combination!

Sorry my thoughts are so scattered today!  It’s my first full day of work this week and hopefully things are going okay and that I’m not messing up too many things.  It’s rather hard to focus!   I’ve gotten a few things done at least.  Last night I designed a shirt for my MS Walk team!  I’ve also crossed a few other things off my to-do list, which I’m trying to keep short.  I guess things are going as well as I should expect.

April 22, 2009

Solu-Medrol – Day Three

Filed under: Uncategorized — by mseds @ 4:14 pm
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Finally, the last day of the IV Solu-Medrol!!!  It’s out of my arm!  YEAH!!!!

Last night I was very not happy that the nurse couldn’t come until 3:30 to do the infusion.  That was just too late.  I hate asking friends for favors (heck, I’ve even had a hard time asking hubby to do things for me), but I decided it was time to ask for help.  The mom of Big Sister’s good friend is a nurse.  I dropped “K” a note last night asking if she’d be comfortable doing my infusion today.  Awesome person that she is, she said no problem and came over late morning.

The infusion took over an hour and a half today.  It was just slow going for half the bag.  Things finally picked up for the second half.  It was nice to sit and talk with a friend rather than make small talk with a vising nurse.  Things worked out well and I’m so thrilled to have the IV out you have no idea!

After the infusion, my senses were heightened again.  Light was too bright, sounds too loud.  I had some lunch and tried to work, but didn’t get much done and decided it would be better to take off and have  a nap.  I’m glad I took time to rest.  Hopefully tomorrow will be a much better day!  I’m excited about moving onto the Prednisone pills, even if it is for 12 days.  I can do this part!  The worst of it is over with.

Thanks everyone for your encouragement and a huge thanks to K!

April 21, 2009

Solu- Medrol – Evening Two

Filed under: Uncategorized — by mseds @ 9:11 pm
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I’ll keep this one short.  I didn’t get pale like yesterday, so that was good.  I did get a bit cranky earlier.  All of my senses seem to be exaggerated.  Everything seems too bright, too loud, etc.  I had to head upstairs while the girls were watching bedtime videos because it was just sensory-overload with Little Sister running around during Big Sister’s show.  Time away helped.  I’m still a bit edgy, so I’m going to call it a night.  Perhaps the Ambien will work tonight.

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