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!

April 20, 2009

Solu-Medrol – Evening One

Filed under: Uncategorized — by mseds @ 8:26 pm
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While getting the girls ready for bed, hubby looks at me and says something to the effect of, “wow, you are really, really white.  I’ve not seen you this pale in ages.”  Big Sister looks at me and calls me something along the lines of a ghost (one of the two of them said that, but it’s a blur now.)  I looked in the mirror and sure enough, I am REALLY PALE!  I have rosacea, so I’m never not red.  I feel out of it and really warm (I’m always freezing, so this is strange.)  I had a bit of a headache, but it passed quickly.

I decided being this pale was probably not normal, so I called the home infusion people.  They called back within 20 minutes.  She asked how I was feeling and I gave her the update.  I do have a 100.1 fever, but I’m sure that’s from my sinus infection (I’m still on Ceftin for that.)  Oh, when the nurse called to set up the visit for tomorrow she asked if I wanted to do it myself. I tried not to laugh, so I gave a polite, “no thank you, please come out” response.  I’m glad I did.  The nurse who called tonight said that she wants her to stay the whole time and to check my blood pressure while sitting and while standing and to have the visiting nurse call her.  I tend to get very low blood pressure (normal is 110/70 and that’s only recently.  I was 90/65ish for a very long time.)  So, they think my blood pressure is just low and said to drink as much fluid as I can and to call back if anything different happens.

My question for the evening is, lots of fluid before bed?  That doesn’t sound too wise.  I plan to take my first sleeping pill ever tonight.  Does this mean I won’t wake up to pee or that I’ll find I pee in my sleep like Little Sister?!?  Will I just sleepwalk to the bathroom or will nothing happen and I’ll be fine?  Perhaps I only pee now in the middle of the night because I’m up and it seems like a logical thing to do.  This should be an interesting night….

April 19, 2009

IV Steroids – Getting Ready

Filed under: Uncategorized — by mseds @ 8:45 pm
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Tomorrow is Day One on Solu-Medrol.  On Friday the company called to set everything up.  They asked if they could drop off the supplies later that day, so I said sure.  A gentleman arrived carrying an IV Pole, a white bag full of stuff, and a large silver envelope containing the medication.  I put the Solu-Medrol in the fridge and put the rest of the stuff where the girls couldn’t get to it. 

Later that evening, I took a peak to see what was inside.  Me and my curiosity!  There was a crazy amount of stuff in there.  It was all of the stuff I try not to see while in a hospital.  I was not ready for that.  In case you have to do IV steroids or are helping someone else who is, I took a picture of all of the stuff and thought I’d share it so that you’d know the kind of stuff that was coming:

IV Steroid Stuff

IV Steroid Stuff

In case you are wondering what on Earth all of this is, here’s the packing list:

3 1000 MG Solu-Medrol/Minibags 116.000 ML

4 50MG Diphenhyd/0MG Epinephri 1ML (Just in case I’m allergic)

3 ADM. Set-Gravity w/dial-a-flo 1 EACH

20 Alcohol prep pads

1 AOB (Assignment of Benefits form)

1 bag, Infectous Waste

3 Catheter 24 GA Insyte Autogard

1 Estimated Insurance Form

3 Extension set 12″ Smartsite

4 Heparin Flush 100 Units/ML 5ML Prefilled

2 Infusion end caps

1 IV Pole

3 IV Start Kits

1 Manual (More paperwork)

3 PICC Shower Barrier

1 Sharps Container, 1.3 QT (that must be that strange looking bottle)

8 Sodium Chloride Flush 5 ML, prefill

1 StartOC/Restart/Change Pt Info Pkt

2 Syring 1CC TB 25g 5/8″ SafetyGlide

2 Syringe 3CC 23GX 1″ Safety Glide

The nurse is coming tomorrow afternoon and I’m trying to stay calm, but it’s not easy.  I’ve always hate IVs, not that anyone likes them, but I truly hate them more than the average person.  Here’s one example.  The best thing about Little Sister’s delivery going so quickly was that they didn’t have time to get in the IV.  I clearly remember being told it was too late for the epidural, but the next words out of the nurse’s mouth was that it was too late for the IV, which was the best thing she could have said.  When I first started writing I’m sure I mentioned that I hated needles.  Well, needles are a thousand times better than IVs.  IVs gross me out because they actually stay in my body.  At least needles come right back out. 

When the nurse called this evening to set up the visit time, I asked if she’d keep the IV in or do a new one each day.  She said she prefers to leave it in.  I’ve never had an IV in that long.  The longest has been about 24 hours and that was the most I could tolerate.  Not only does the needle gross me out, but my skin is so sensitive that I have a lot of trouble keeping on adhesive tape for that long.  This is going to be interesting.  I said I’d like to talk with her about it tomorrow, after I see how good she is at getting in the IV (I didn’t tell her that last part.)  That’s the other thing, it’s rather hard to get an IV into me.  During a previous surgery they had to try 3 different spots before they could put me under and I woke up with it in a 4th spot.  I was so black and blue that I looked abused for weeks.  I have faith that this woman will be better than whoever it was that did that to me.  I’m also going to drink a ton of fluid tomorrow morning to make sure my veins are as cooperative as can be!

I’ve scanned a few things others have written about their experiences and tips.  I think they may have just freaked me out more.  I really don’t have any idea of what to expect.  I think I’m about as educated as I’m going to be and I should probably stop searching for more info, just do my nightly shot, and call it a day.

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