Friday's Doctor Appointment & Hard decision to make

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I made the trip to Kennewick, Friday to see the rheumatologist. I can’t say I came away with any more information than what I already knew.

It became apparent that when it comes to diagnosing Joint Hyper-mobility Syndrome, that he ignores half the criteria for a correct diagnosis.

  

There are two things that are recommended to correctly diagnose this. The Beighton Score, which is a number between 1 and 9 given for certain joint movements that you can do.  A score of 4-9 is a positive for JHS.  The other thing is the Brighton Criteria which is a grouping of various other non-joint symptoms along with the Beighton Score. 

 

The Beighton Score is considered Major Criteria and the other symptoms added to that which make up the Brighton Criteria are considered Minor Criteria.  The requirements for diagnosis are any one of the following:

·       Two major criteria

·       One major criteria plus two minor criteria

·       Four minor criteria

·       Two minor criteria and unequivocally affected first-degree relative in family history

This doctor completely ignores the minor criteria.  Based on his assessment, I score a 3 which he says is border-line JHS. As I talked with him and asked him about different conditions and symptoms I have he  would say, “That could be part of hyper-mobility syndrome.”  So, he left me a bit confused as to whether I have it or don’t have it in his opinion.

It wasn’t until I got home and got out the criteria that I realized he completely ignored the minor criteria and gave his diagnosis based solely on the Beighton Score and nothing else.  When I take into account the minor criteria with the major criteria, it appears that I DO have JHS.  I have four of the minor criteria, which is a positive diagnosis.

One thing I do agree with him on is that there is no treatment for it, other than a program of strength training.  He recommended that I get with my PT and get started on a strength training program.

He really hammered on my bone loss and the fact that I am not taking any medication for it.  The reason I am not taking anything for it is because when I started Fosomax 10 years ago, it caused me head to toe pain and muscle cramping.  By the time I figured out what was causing it, I was only able to stand up in the kitchen for about 10 minutes at a time before I would have to sit down due to the pain in my feet and legs. It was recommended that I buy & wear a very expensive brand of shoes and inserts and if that didn’t work, I would need surgery on my feet.  I constantly felt like I had been run over by a truck.  My physical therapist kept asking me what I had been doing to make myself so sore and he found it hard to believe that I had not been doing anything.

So once I found out it was Fosomax that was causing all the trouble I quit taking it and was afraid to try anything else because they all listed the same side effects.  This doctor said I should not let one bad experience with Fosomax put me off from trying the other bone loss drugs.  So I came home and looked up Actonel and Reclast, two that he recommended I try.  Both of them have all the same side effects that Fosomax has.  He told me that Reclast which is an IV infusion has virtually no side effects.  After reading the list of possible side effects of Reclast, I came to the conclusion that Reclast has the potential of actually being worse than the pills.  Once that infusion is in your vein, if you end up with bad side effects, you are stuck with it for a year.  At least with the pills, if you get bad side effects you can just stop taking the medication and the side effects should subside in about a month.  With Fosomax it took a month to be clear of the side effects.

Personally, I have a bad record for being the side effect queen.  I have allergic reactions to IV contrast dye, bad side effects to Fosomax, flu-like symptoms and headache to Ibuprophen, unable to function with Remeron, and unable to function with Vicoden. 

 

I am between a rock and a hard place.  Do I want to play Russian Roulette by not taking anything for my bone loss or do I want to play Russian Roulette by taking something for my bone loss.  It’s a lose/lose situation from my perspective. 

 

I was told 10 years ago that I would fracture a hip or be a candidate for a hip replacement within three years.  I’ve made it seven years past that time without any drugs and I’ve brought my bone density up from -3.00 to -2.70 in 2007, which is considered a statistically significant increase. Not sure what a current BMD test would show now though.

It’s a hard decision.  Do I want to risk ruining my health with drugs or do I want to risk ruining my health with a possible hip or back fracture?  What would you do?