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twin2jfr
New Member


Date Joined Aug 2008
Total Posts : 7
   Posted 8/2/2008 8:37 AM (GMT -7)   
Hi all....  first time on.....  This is a big step for me because once I write about what's happening then it will be real.  For the past 4 months I've noticed that I constantly trip over my left great toe.  I thought it was because I was wearing sandals or flipflops all the time and was trying to keep them on.  It seems to happen when I don't pay attention or I'm in a hurry.  It's has gotten to be a bad joke around here.  As I have joked with friends and family "I could trip just when the tile changes color!" I have been doing searched online for ALS and MS.  I have been married 33 years, I am 55 years old.  It scares me, but I'm afraid to talk to my husband about it.  I know he will be so worried.  We have a wonderful life that couldn't be better.  3 grown children and 2 grandchildren.  The best time of our lives. 
 
But now I know I have to.  Today I went out for a walk.  I hadn't done that for a while because I had hurt my foot in a fall.  I was so tired on the way back that I couldn't believe it.  It was only 75 degrees out and there was a nice breeze so I shouldn't have been overheated.  It was less than 2 miles.  I usually do over 3-4.
 
Thanks for letting me start. 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 8/2/2008 9:46 AM (GMT -7)   

Hi and welcome to the MS board.  Please just take a deep breath before you start panicking.  Indeed, tripping or being tired after a two mile walk can be disturbing, but you are a long way from a diagnosis.  I am not trying to minimalize your symptoms but they just don't scream MS at me.  I think you need to have that conversation with your husband and then certainly go see your doctor.  I would not go in saying, "I think I have MS or ALS."  Just tell him or her your symptoms and how long you have been having them.  See what he or she suggests.  If you are unhappy with this response, you may consider making an appointment with a neurologist. 

Please try to relax.  A diagnosis of any kind with such vague symptoms can be a long time in coming.  Please feel free to ask questions and share as much as you want here.  We have many here like you that do not have a diagnosis, just symptoms in common.  Good luck and I hope you continue to post and let us know how you are doing.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 8/2/2008 12:54 PM (GMT -7)   
Welcome twin, taking that first step to trying to figure out what's changing in your body is a huge challenge!  But congratulations for facing it!
 
I can tell you like Gretchen pointed out, this is a very long road and a wise dr will start at the beginning (the bottom of the list of least illnesses) and work up. There are many many things that mimic MS and ALS and a multitude of others. Try not to project anything disastrous on yourself, it's devastating to your outlook. The way I figured it, the doctors spent alot of money for their educations, let them earn it figuring it out for you. That's why you pay them (and the insurance companies charge us the big bucks).
 
With all that said, relax and be good to you. Do what you can, keep a journal of how you're feeling and what you're doing, the temps you're doing it in (like the weather and walking and miles and time) etc... that's helpful to the neuro when you get to him. Let the docs ask you for these things, if they don't ask them, if they're not interested, find one who is. It's kind of sad but in my experiences, I found I had to be very persistent alot of the time and make the dr work for me... and if they didn't find the ones who would. There's a trend in drs today to allow the patient to tell them what their problem is, it lets them off the hook so to speak but it shouldn't be that way when you're seeking like now.
 
Good luck and keep hanging around asking questions. This is a great place for resources and support!
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


twin2jfr
New Member


Date Joined Aug 2008
Total Posts : 7
   Posted 8/3/2008 6:14 AM (GMT -7)   
Hi Gretchen and D'awesome!
 
Thank you both for your input and kind words.  I know my symptoms are nothing compared to what others are going through.  I have been online trying to come up with ideas but I think I'm delving into it way too deep and should just wait it out and see what happens.  I have an appointment with my PCP in a couple of weeks.  She's great and I really trust her.  Never makes me feel stupid or that what I'm asking is unimportant.  I'll run it by her and see what she says.  She's also at one of the best hospitals in Boston, so I know I'm in good hands.
 
As far as my husband is concerned, we talked last night.  I told him about how I felt when I went out walking and he told me to relax.  He reminded me that it had been a while since I did alot of physical exercise and to just take it slow.  When I injured my foot it wasn't from tripping, for a change.  It was a wet floor in a restaurant.  The airquality was really heavy yesterday.  Even though the temps weren't too high that could have been the problem. 
 
Thank you for your time.  I think I was still feeling the effects of almost falling "one more time!" and overreacted. 
 
I wish you all well and good health.  MS is in our family.  My brother-in-law has it for over 12 years now.  They really have come a long way with treatments.  He's doing so well!  Back when I was in nursing school, my room mate was diagnosed with it and due to the fact that she didn't have good or even adequate medical treatment, she didn't do well at all.  That was over 30 years ago. 
 
Thanks again!
 
Joan


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 8/3/2008 10:44 AM (GMT -7)   
You're most welcome Joan, it's alright to keep asking questions though and it's great that your PCP is so good you've got a good trusting relationship with her. I'm sure she'll get you checked out right.
 
Just be sure not to minimize yourself either. Be aware and honest and then just observe your situations. I went a long long road of over 12 yrs experiencing all the weird symptoms without any confirmation til it got seriously noticeable one day with my PCP. From there the roller coaster for the dx started and it still took 18 mos to get it. You could be just starting your 'journey'. So no panic, just enjoy life and live great, be aware. :-)
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 8/3/2008 5:26 PM (GMT -7)   
Hi Twin:
I am in the place where the docs are trying to figure out what is going on. The girls here really know alot and this is a great place to come and ask questions. There are alot of people in limbo and have not been diagnosed. Everyone is in that place at some point so have MS or something else. You can keep gathering information and look at past posts some are really helpful. Everyone has something to offer. You know when you are not feeling well and things have changed.I can relate to you not wanting to tell your husband and scare him. I try to limit what I say to mine so it is really helpful to have a place like this to come to.

Sue

twin2jfr
New Member


Date Joined Aug 2008
Total Posts : 7
   Posted 8/4/2008 6:37 AM (GMT -7)   
Hi all,

I'm taking a different direction in this now. These forums are great and it's nice to hear from other people. I'm wondering if some of my problems aren't related to medications I'm taking. I have a hiatal hernia. It was discovered about 7 months ago because I was having tremendous heartburn off and on for quite some time. The doctor put me on Prilosec. I had no luck with the OTC brand so she wrote a script for it. That worked great. After 6 months I went for another endoscopy and things are better but I still have some inflamation in the esophagus so she increased my dose. I now have a rash on my legs that I was just thinking was exzema. I have had a mild case of that on my stomach off and on for years. I didn't think much of it until I went on the prilosec website. Prilosec can cause rashes, lethargy, wheezing and many of the other symptoms I now have. I have a call into my gastro MD and am going to see what she has to say.

I've never been one to look for problems, but there has to be a reason for the way I feel. It's not just old age! I won't take that for an answer..... I'm determined to turn this around..... I have 2 little grandkids and I need my energy for them!

Thanks to all of you.... do you mind if I check back once in a while?
Joan


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 8/4/2008 8:18 AM (GMT -7)   

Joan,

You are always welcome here.  You certainly don't need a diagnosis to be a welcome member on this board!!  We have other members that do not have MS here.  You just need to want to give and receive support.  That is what this is all about.  I am glad to hear that you are going to continue to be assertive about finding answers.  That is how it is done.  No one knows your body like you do.  You just keep telling them, "something is not right".  Eventually you will get some answers.  Be patient, it can take a while to get the right answers.  Please feel free to post all you want.  Let us know how you are doing.


Gretchen       co-moderator MS board       diagnosed with MS July 2006

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