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New Member

Date Joined Nov 2006
Total Posts : 12
   Posted 8/2/2007 9:28 PM (GMT -6)   
I am new to the MS message board.  Usually read the fibromyalgia site.  But went to the Dr. a couple weeks ago to renew meds and gave her a list of new symptoms I have been having.  I have previously been diagnoses with hypothyroid, osteoarthritis, fibromyalgia, and ankylosing spondylitis.  After she made a note of the new symptoms, she told me she thought I might have MS.  She ordered a CT scan to be done two days later, on a Friday.  On Tuesday I called to see if there were results from that and was told someone will call back.  They did... with an appointment for an MRI the following Friday, but no explaination of why.  I had the MRI done last Friday.  I waited til Tuesday to call for results.  Was told to call back later today.  Still nothing.  Called twice Wednesday, was told she will call you.  Called again today and was told the same thing.  My dad happens to go to the same DR. and had an appointment today.  He told her how frustrated I was getting not knowing anything or getting any calls back.  Well guess what.  No one ever let her know I had called.  She called me back today and told me how sorry she was.  But she did tell me that I need to see a neurologist as the MRI does show that I either have MS or something along the same line as MS.  But neurologist here are booked out 3 to 4 months.  So here I sit, in LIMBO.  No official diagnosis, no new meds, just waiting til they make an appointment for me.  Sorry this is so long.  Just wanted to connect with others about this.  Does anyone here have "something along the same line as MS, but not MS"?  I am so lost.  Thanks for your help.  I am a wife and mother in my mid forties.  I work full time managing 100 senior citizen apartments, and am on call everyother night as well as office hours Monday thru Friday.  I love my job, but already am noticing how some symptoms are affecting my work.

Regular Member

Date Joined Jul 2006
Total Posts : 95
   Posted 8/3/2007 4:42 AM (GMT -6)   
Hi there and welcome to the forum.
I know exactly what you are going through. This is all new to you and very scary. There are lots of us here in "limbo" and we are all aboard the "limbo train" to ..........nowhere! In other words no diagnosis. I am very lost also.
It sounds as though you have been going through all sorts of other medical symptoms that your Doc has decided were maybe something else and not MS. Here comes the worst part......even if you have an MRI there is no guarantee that the Neuro will make a decision on just one MRI. Please check out my posts in here and also Rhondab's, and Karen's who has posted in my recent thread. We are nearly all in limbo land with no parachute and more importantly no answers.
We are here for you so please keep us up to date. I wish there was something I could say to you that would make you feel more calm. I sometimes think that this is a real test for us what ever you believe and if nothing else you can take away lots of personal knowledge from people here who share their pain, sadness and frustration. This is a very supportive forum and is very much my lifeline when I can't cope.
I was at my Docs today..see my other posts... and she was speaking on the phone to the welfare department here and said to her "diagnosis of MS can take up to 10 years! Well, I nearly fell off the chair, I was already crying my eyes out and using all her tissues. I am nearly 50 next year and mostly all my "wheels" have fallen off. All I can suggest to you if you can find the time, hit the internet and learn as much as you can about MS. There are some great sites with heaps of info and some of it ground breaking! This will help you understand what is happening. The docs won't do anything about your medication until they have a better understanding of your condition and/or a diagnosis. They may want you to have a lumbar puncture as this test does show up MS through changes in the spinal fluid. That test is a bit yuk but soon over. If they do come up with a diagnosis for you then they will be able to start you on medication that will help your symptoms and help you manage your work commitments.
Good luck and try and stay positive. I had to wait to see my Neurologist for almost 12 months before I even had an MRI. Where I am (Australia) a GP is not allowed to order this test, only specialists, very frustrating!
Hang in there, that is all any of us can do and keep posting in the forum as often as you need to, it is a real life saver. Bring a box of tissues with you and vent your heart out, we all do exactly the same thing.

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