I am new here.......really need advice

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derbygirl71
New Member


Date Joined Nov 2008
Total Posts : 4
   Posted 11/18/2008 6:21 PM (GMT -6)   
I am new here and so happy I found this board.  
A brief summary about my situation:  I went to the dr about 3 months ago complaining with awful body aches and a sore throat they said I had strep throat and gave me antibiotics. It lingered on with multiple trips to the dr and trying 4 different antibiotics & steroid shots. Then they referred me to a EN&T doctor. He said I had extreme inflammation and said I had GERD.  I tried the antacids but they didn't help at all. Well I am feeling worse and worse this whole time instead of getting any better and new symptoms arise. First I have a awful nonstop headache then I wake alomost 2 weeks ago with the rigth side of my face drawed and my vision blurry. My vision has been getting worse over the past few months anyways. Then my right foot started turning to the outside and my coordination and balance seems really off. my ability to think on my toes and stay on top of everything is also been really fadin lately. I went to a different doctor and he ran a EEG AND CT scan (he wanted to do a MRI but my insurance refused to pay for it) He said the results show I have optic neuritis. He said in his opinion he feels 95% certain I  have MS and wants to refer me onto a neurologist. Well my insurance is requiring alot more information and in the mean time I am trying so hard to be able to work daily just to keep my job so I can have insurance. I work as a service manager for a mobile home manufacturer so my job is very mentally strenous and stressful. It takes everything I have to make it through the day. Much less having time for 2 kids and a fiance. I feel like my body is twisted and tied in knots. I feel I just want to cry from the unknown helpless feeling. If anyone has any suggestions on coping with this situation or dealing with insurance companies your help woukd be greatly appreciated.
Thanks So Much, Linda  

Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 11/18/2008 6:40 PM (GMT -6)   
Linda,
I don't know much about insurance companies so I can't be of any real help there. All I can say is that you need to slow down and take a deep breath. I can tell you that sometimes it takes a long time to get where you need to be to get the tests done that need doing. I had to see a neuro 3 times a year for 2 years before I was told that i have MS and a totally different dx too. What you need to try and do is figure out exactly what your insurance company needs so that you can get in to see a neuro and have that MRI done. When I did have insurance i always paid for the more expensive plan so that I could see whatever doctor I needed to whenever I needed to see them.
The only way I can deal with the the memory issues....I carry a notebook around with me and write EVERYTHING down. I end up taking notes on my life even if it seems stupid to me at the time, it's normally the most minor thing I wrote down that helps me figure out what I was suppose to be doing. And keep posting here...let all you frustration out here. We all do it and we all listen when everyone else does it too.

Keep your chin up and fight the good fight.
Heather
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  none at this time
 
 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3537
   Posted 11/19/2008 8:28 AM (GMT -6)   
derbygirl71,
 
Welcome to the board.  I am sorry you are not feeling well and having trouble getting answers.  I can't advise you on your insurance issues.  Do make sure you have a in depth copy of your policy.  Ask a representative from your insurance exactly what it would take to get that MRI.  I have to have pre-authorization, but all it took was a doctor requesting that MRI. 
 
You may want to check out the site below for information on getting an MS diagnosis.  Good luck and let us know how you are doing.
 
http://www.mult-sclerosis.org/diagnosingms.html
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


derbygirl71
New Member


Date Joined Nov 2008
Total Posts : 4
   Posted 11/19/2008 5:24 PM (GMT -6)   
Thank you so much for the kind words and advice. I went to my  regular optemitrist today and he did a exam with & without dilatinjg my right eye and came to the same conclusion my medical doctor did. But the good news is he got me a appointment with a neuro-optomoligist on Friday and he said he would probably do the MRI asap.   It feels good to finaly have ppl in the medical profession pay attetion to what I have been trying to tell the for a while but it saddens me it has had to progress to this state fopr them to pay attention. My hands are cramping so bad right now that I can barely type the correct words. I am hoping and praying for some answers on Friday. God Bless you all and this board. 

Meche
Regular Member


Date Joined Nov 2008
Total Posts : 41
   Posted 11/20/2008 4:34 AM (GMT -6)   

Hey Derbygirl,

Just wanted to wish you some luck for Friday, I only joined here a few weeks ago and everyone is so friendly and helpful, I had no one to talk to about MS, until I joined here and everyone is in the same boat so we all know how each other feels.

Keep your chin up and best thing you can do is stay positive. I too have 2 kids so I know how much work they are on their own, but you will get there and if you need to chat then just hollar.

 

Take care and let us know how you get on.

Love

 

Meche

xx

 

 


Meche xx


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 11/20/2008 8:16 AM (GMT -6)   

Hi Linda,

I can't advise you on your insurance but what I can tell you is this.  Speaking from personal experience I know for a fact (working in the industry) that 50% of the time an insurance company will deny something just because most people won't question it.  Question any denial.  I agree with the suggestion to look over your policy.  If a preauthorization is required usually a neurologist that is used to getting them can get it almost immediately.  Yes take a big breath because all of this can be overwhelming.  I was just diagnosed in September and the first month seemed like it went on forever.  Also look into your work about FMLA.  What I have learned is that you need to stay positive and go for what information you need head on.  Good luck.  There are lots of people with lots of help and support here. 

Cindy


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 11/21/2008 2:52 PM (GMT -6)   

Welcome Linda, I hope your appt. goes well today.

Sunny


derbygirl71
New Member


Date Joined Nov 2008
Total Posts : 4
   Posted 11/23/2008 10:58 AM (GMT -6)   
Hi All! I went to the appt with the neuro opto and in the least can I say his bed side manner was really lacking. Either that or I am just to the desarate stage and all I want is answers instead of feeling like I am being misunderstood. He said the optic neuritis is minimal but he said I failed my perifferial vision test which is a classic case he would see in patients with MS. Didn't really understand that part. Not sure whether this is good news or not. He seemed to dismiss the ON for the most part but concentrated on the other. No MRI ordered which devaststaed me of course. He said wait see a regular Neuro and he could confer with him if need be. Any suggestions at this point would be much appreciated. Thanks, Linda

Maureen21
Veteran Member


Date Joined Apr 2007
Total Posts : 1599
   Posted 11/29/2008 9:50 PM (GMT -6)   
Okay, I don't post on this board usually, except for a few times (maybe) in the past year.


This post caught my attention... sore throat, body aches, eyesight issues... please investigate lyme disease. You need to see a Lyme Literate MD (definitely not an Infectious Disease Doctor) and get tested through a good lab that tests for more strains of the bacteria like Igenex, Clongen or Fry (definitely not Quest or Labcorp).

I am not one of those people who tries to tell everyone they have lyme, but your symptoms definitely sound like they should be investigated. I was once where you are... thinking I had MS,probably would have been misdiagnosed with it, but I pursued lyme and now I am 90% better! My GP said it wasn't lyme and they were wrong...... crappy tests, bad doctors. Lyme is a clinical diagnosis.

Oh, and steroids are the worst thing for lyme disease...... don't ever do that unless you are certain it is not lyme!

Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 12/1/2008 9:10 PM (GMT -6)   
Linda,

Hey, I so sorry that you have more questions than answers now. My understanding (and I may be wrong so don't quote me) is that ON comes and goes as relapses come and go. The perifferial vision test is how well your eyes work when you aren't looking directly at something. When I had my last test, mine was fine. But I saw an eye surgeon for my test. This one is may concern the doctor because this is part of the vision that we use when we are driving a car. I am not sure exactly why he was concentrating on the perifferial vision. From my understanding, this could be caused by any number of things.

I wish I could wave a wand and have everything work out for you. Sometimes it just makes you crazy wondering why your body doesn't work like it should. My best remedy for worry is laughter. I find something to laugh about even if I have to call my crazy cousin who lives down south.

I hope you find your answers sooner rather than later.
Heather
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  none at this time
 
 

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