Possible MS Diagnosis

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mokeyho
Regular Member


Date Joined Aug 2009
Total Posts : 103
   Posted 8/30/2009 4:42 AM (GMT -6)   
Hi All,
 
I was on the Lyme board, as I thought I had Lyme. 
 
I went to a neuro and she said she's pretty sure I have MS.  She based her opinion on my negative WB results (Lyme test) and MRI.  She's sending me for another MRI of my lower back because she said MS affects that part of the back.  I have five lesions total and one of them is on my spine.  My thyroid number has doubled in the past five months, which puts me slightly out of range, meaning Hypothyroid (underactive).  I developed major sun-sensativity in April 2009.  I have achy joints and unexplained sore throats. 
 
I am going for a spinal tap and MRI of the lower back this coming Thursday.   She said if there is lyme it will definitely show in the spinal fluids.  She is testing me for other auto-immune disorders (HIV, Lupus, etc).
 
After she said "other auto-immune" disorders, I got to thinking back.  In 1993, age 20, I had Bell's Palsy.  When I was 10 years old, I was diagnosed with two allergies- cold and pressure- both would bring on hives and itching.  Such as the elastic band in my underwear or cold raindrops.  I eventually "outgrew" the allergies.  And now this sun allergy.
 
Does anyone have any ideas?  I am going to see an LLMD (Lyme Literate Medical Doctor) on Wednesday.  I figured it can't hurt to get a second opinion. 
 
I'm a little bummed.  I'm a little scare of the MS treatments.  I've been healthy my whole life and this is really shocking to me, but of course I will deal with it and move forward.  I have a beautiful 2.5 year old son, so I need to do whatever I can to stay healthy.  Thanks for reading. 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 8/30/2009 8:21 AM (GMT -6)   
Hello there,
 
I am sorry you find yourself with chronic health problems.  I am glad you are being aggressive and searching for answers.  Lesions are definitely not a good thing.  Please know that lesions can be caused by many diseases and disorders so this may not be MS.  It very well could still be lyme.
 
Your symptoms of sun sensitivity, achy joints and sore throat are not typical complaints of MS. 
 
I have two sons.  Kids are wonderful.  They take the focus off of yourself and keep you busy tongue .  I am sure he is a joy.  That is such a fun fun age!  Mine are much older still loads of fun. 
 
What is it about MS treatments that frightens you?  If I can answer any questions there or help alleviate some anxiety let me know.  I am relatively new to MS but do manage to live with hope and joy.
 
Good luck on your quest for answers.  I hope you find them and some positive treatment soon.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


mokeyho
Regular Member


Date Joined Aug 2009
Total Posts : 103
   Posted 8/31/2009 9:53 AM (GMT -6)   
Hi Gretchen,

Thanks for the response. I was definitely caught off guard with the thought of injections. I just want to get back on track and find out the best way to live life, without the fear of waking up one day wondering if I am going to lose my vision or not be able to walk. I am afraid of being looked at differently and being treated differently. I guess no one wants to be "sick". I am coming to terms with it still. So, do you do the treatments? If so, which one are you on? My physcian gave me three choices- Rebif, Copaxone and Achievable. I couldn't decide if no flu-like symptoms is better or if to get one that doesn't have to be refridgerated. I would love to hear your thoughts. She sent me home with the three huge packages of information and told me that it was my homework.

Thanks Gretchen :) Your comment about living with hope and joy sure gives me hope. We just have to be positive.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 8/31/2009 10:52 AM (GMT -6)   
I am familiar with Rebif, and Copaxone.  I don't know about achievable.  Could you mean Avonex? 
 
I am on copaxone.  I am not a needle-phobe so it has not been a problem.  That first shot was a bit scary but after that it was not a big deal at all.  Some people never do get used to giving themselves shots.  If you get a script for one of these drugs, then you get a nurse that comes out to train you.  It is all very easy and they are all supportive.  I know with Copaxone and Rebif you can use this auto inject thingy.  I don't.  I just do the shots manually.  With Copaxone, you get these hot, hard, lumps.  I inject really slowly and my lumps aren't as bad.  You can't adjust the speed with the auto inject thing.  Most people really like the auto inject though.  For Copaxone and Rebif, the needle is quite small and very fine.  You just barely push and it glides right in....no worries.  Don't let needles keep you from getting treatment if it is what you need.
 
I wanted to avoid the interferon flu-like side effects to I went with copaxone.  So far, so good.  It is definitely slowing things down.  It takes about a year for you to know if it is working though!
 
So it sounds like you have a diagnosis if your doctor has given you the medication packets.  I am sorry!  It is a lot to deal with, the whole incurable, progressive disease.  You are right, dealing with the possibility of having real and permanent disabilities is really scary. 
 
Are you going to treat for Lyme at the same time?  Well, keep me posted.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


pam1201
Regular Member


Date Joined Sep 2009
Total Posts : 21
   Posted 9/3/2009 12:46 PM (GMT -6)   
im curious whether the meds made you high or loopy, i hate that since i am my mothers care taker at the moment.
Always Blessings*Never Losses


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 9/3/2009 8:38 PM (GMT -6)   
Pam,
 
No, you don't really feel loopy from the progression therapy meds.   I don't feel a thing.  I get a local reaction from the shot, like a welt.  But that is it.  I have a full time job.  It doesn't interfere.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

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