New Member - Dx 1993

[LazyFisher]

Hi All,

Just joined the group and wanted to say 'Hello' and introduce myself.

I was diagnosed late in 1993 (late 20's) but, can remember symptoms, symptom rather - pins and needles in my right arm, back when I was 15-16.  The majority of my symptoms have been neuropathies.  I was in the lottery for Betaseron.  When my number was drawn my doctors didn't want to give the 'official' diagnoses of MS.  I later started Betaseron and had allergic reaction to it.  Subsequently I was on Copaxone and had to stop it because of injection site reactions.  Currently I do not take a disease modifying drug.  Only those for symptom management.

I have also been diagnosed with migraines, diabetes, and ITP (Idiopathic thrombocytopenic purpura).  The migraines I have had, for what feels like, forever.  The diagnoses' of diabetes and ITP didn't come until after I had had IV Solu-Medrol in back-to-back months, less than 30 days apart.  Not long after the second round of steroids I was admitted to the hospital with a blood sugar of 1354.  The ITP diagnoses came later that same year.  First we treated it with, wait for it..., steroids.  Each dose shot my BS's sky-high and required insulin injections.  The prednisone did help my platelet count but, with it messing up my sugar it wasn't a long-term solution.  So, we removed the spleen.  Which helped for awhile.  The next course of treatment was rituxan therapy.  

While I wouldn't consider the rituxan therapy 'fun' it did help and I think it helped with MS exacerbations.  Before the rituxan I was having, well...I guess one big relapse.  Now, mainly it is just flare-ups of old symptoms.  Because of my reaction to prednisone we try to stay way-far-away from it for treatments.

Somewhere in there have been bright spots:  My wife for one!  Love her, she's been with me since before the MS diagnose's.  She is an RN; that has been a tremendous help.  Not only navigating the health care system but also talking to the many varied and various doctors we meet on this journey and helping with medications (reactions, interactions).  One thing I've found to be extremely helpful is to keep track of all the medications I've been on.  How long did I take?  When?  Dosage?  Reactions?  Did it help?  Keep track of this it will help you down the road.

My biggest bright spot is my almost 2.5 year old daughter (this April)!  We completed her adoption in December 2009 --- still seems like only yesterday!  She makes me smile every day.  The MS diagnoses caused quite a wrinkle in the adoption process.  I'll just leave it at more documentation had to be filed and filled out.  

Now I'm a stay-at-home dad and I couldn't be happier.  I do have to get family to help out now-and-again.  And my wife has had some good job news.  They basically kicked her out of her office and told her to work-from-home!

So, I'm a been-there done-that kinda guy.  If anyone has questions I'll do my best to answer them.  But I'm still learning too!  I just started an exercise program at our local wellness center.  I'm still uncertain of its benefits...if any.

Now, I'm just waiting for better weather so I can go fishing!

Take care,

Eric
- 'God does not deduct from a man's allotted time the hours spent fishing' - unknown

[Lulu54]

I once caught a fish when casting - the stupid blue gill swam in the way and it got hooked through the fin.  Pretty funny because I didn't want to catch anything.  

Welcome again and I really hope you will stick around and join our conversations.

best,
L

[LazyFisher]

Sarah,

Thanks for the welcome.

I have always talked openly about my diagnoses and symptoms of MS.  I find it helpful to me and also to the people to whom I am speaking.  I also find it educational.  I'll often get talking and someone will (sometime me) will ask a question I cannot readly answer.  It is a good time for me to do some research.  I always follow the axims:  'There are no dumb questions.' and 'If you don't ask, you'll never know.'

Before I had to leave the workplace because of MS, I was a professional computer geek.  I'm still a computer geek, I just don't get paid for it anymore.  Anyway, back in 1984 when I started personal computers were as much a mystery to people as MS is still to many people today.

Holly, is a patient adocate.  Most of what I know I've learned from her.  Especially when it comes to doctor-patient relationships.  It is so incredibly important to have doctors to whom you can speak and doctors that will speak TO you and not AT you.  And the doctors have to be willing to speak with the rest of your health care team.

I hope that didn't come off as preach-y.

Thanks for the welcome.

Eric
-"God does not deduct from a man's alloted time the hours spent fishing." -unknown

[LazyFisher]

Alex,

Thanks!  It took almost five years to complete the adoption process.  Part of the problem in the begining was that the Chinese doctors really had no idea what MS is.  It is virtually unknown in Asia.  That's what we were told anyway.

Our biggest fear while we were traveling around China was that I'd had an exacerbation.  Health-wise it was an uneventful trip!

Migraines:  Have you been able to correlate MS to migraines or migraines to MS?  I haven't.  Which treatments have worked best for you?

Eric
-"God does not deduct from a man's alloted time the hours spent fishing." -unknown

[LazyFisher]

Ooops, wrong button....

I was alert enought though to tell Holly my medications and dosages.  The pharmacist argued with her about one.  Holly said something to the effect, "My husband knows what he takes."  Holly didn't want to argue and came back to my room.  As it turned out I was right.

I was oh-so thirsty.  I asked the nurse for a glass of water.  The nurse was like, Oh, honey wouldn't you like something else?  We have sodas and juice?  I'm a big time soda guy; I asked for a soda.  Several minutes later the nurse came back and took my soda away.  I don't know why but that story always makes me smile.

My blood sugars are down to a much more normal level.  And my A1C shows only slightly outside of normal range.  Just as long as I stay away from steroids.

Exercise:  Thanks, I'll give them a listen.  I know that exercise will help.  The reason I joined this wellness center is that they are part of the local hospital and they have physical therapists available to consult.  It is just difficult somedays.  I've only been going for a couple of months, 2-3 days a week, about 45-60 minutes of exercise, half cardio, half resistance (weigts).  I'm going to add swiming as soon as I can find my swimsuit.

I'm going to give it more time...the rest of the year I think.

FISHING:  You have it exactly!  My fishing buddy and I have come very close to fishing that way.  :D  I'm in the process of putting together a lazyfishermen web site.  It's mostly pics of me and friends kicking back fishing and we'll have a forum, and we have some great stories to share.  We actually went fishing with unbaited hooks.  My friend caught a fish!

Thanks for the welcome,
Eric
-"God does not deduct from a man's alloted time the hours spent fishing." -unknown

[LazyFisher]

Hi Lulu,

Thanks!  

You are doing better than I am....the only way I can spell ITP is:  I.  T.  P.  I'm glad to hear the steroids helped your daughter.

The whole BS situation was kind of surreal.  Holly, my wife, is mad that she didn't figure out what was going on much sooner than a trip to the ER and a hospital stay.

There was so much stuff going on that it made it hard to see.  I was just coming off steroids.  Which were prescribed for leg weakness.

Coming off steroids always caused issues.  So we attributed the weakness to that and also to MS.  I think our first clue that something more was going on was when I couldn't uncross my legs.

I was awake most of the time.  I'd kind of drift in and out.  I keep my medication list on my PDA.  Holly brought it to the ER but it wasn't charged.  I was alret enough though

[Sparkysarah]

Hi Eric

Thanks for sharing your story with such honesty and for joining our forum.  I am sure you will be a great advocate to those of us who have not been dx'd for so long. For me this was just a year ago and I have learnt so much from this forum which has been an inspiration and a great source of support for me.  I have never heard of ITP so I have already learnt something from you.

Best wishes

Sarah

[anon07072023]

Thanks for sharing your experiences. We have people on here who's had MS for years, others who are recently diagnosed, and yet others still waiting for a correct diagnosis. You've landed in the right spot.

I look forward to your contributions here.

-Kelly

[jensequitur]

Hey, welcome to the forum!

[JemmAus]

Wow, welcome.

Awesome news about your daughter.

And yet another person with MS AND migraines!

[Lulu54]

I would also add that the only way to fish is to sit on the dock, dangle your feet in the water, forget to bait the hook, and sit quietly for a long period of timewithout having to wrestle one to the shore.  That's my idea of lazyfishing.

[Lulu54]

Hi Eric and welcome to our special spot on the web.  Thanks for sharing so much of your story so we can know you a bit more.

Congratulations to you and your wife on the addition of your daughter to the family.  Children bring a different joy and perspective to every family.  

I am well familiar with ITP - I can even spell it.  Our daughter had it hit her when she was about 2 years old.  Many days inthe hospital and lots of mega doses of steroids got her ITP under control, too.  That BS number you mention is crazy.

I wrote a lengthy piece about MS and exercise, based on some recent teleconferences I have listened to. you might want to listen to these talks as well for encouragment and ideas of what to do to strengthen your body.
The information on  these is in a post at

http://www.medhelp.org/posts/Multiple-Sclerosis/MS-Foundation-teleconference-recordings-available/show/1491313

Welcome again, I'll watch for you around,
Lulu

[HVAC]

Welcome Eric,
   Congrats on your daughter. Sounds like you have good attitude with your adversities. We can use folks who have had MS for a long time. I understand the migraines I have those myself.

Alex