Lost in Limboland

By Lady In Limbo Saturday, August 15, 2009

Hi everyone,

I'm new to this sight.  I feel like I can't "talk" about my symptoms anymore, because I feel like at this point everyone has tuned me out.  Two months ago, I was supporting my family of four with my career, I haven't worked since, might lose my job because I've used up all of my FMLA, not making any money because I've used up all of my benefit time, I have two boys that I can't do the things I want to with on summer break because of financial and physical conditions, and if I have to tell one more doctor my symptoms I'm going to scream.  Here I go anyway....my symptoms are entire body numbness, loss of feeling in both of my lower legs, EXTREME fatigue, headaches, when I walk it feels like my knees are tied together.  Neurologist is sending me to a university neurologist because he doesn't treat these cases.  Brain MRI shows "non-specific" lesions.  EMG shows slower than normal responses.  I feel like these doctors just don't want to take the responsibility of making a diagnosis.  Waiting for my primary to give me some direction.  What do I do next?  I feel like I'm sitting here at home waiting for an answer.  For a person who worked full time it's very difficult to sit here and wait....not knowing what will happen with my life is the worst!

8/15/09 12:47pm

You must move forward and focus on your abilities.You clearly are an in touch,intelligent woman.Loss,if productively expressed through a modality fulfilling to you can be emotionally enriching.Having MS and experiencing the full range of problems,puts me in a place of gratitude.When I fall,I arise,provided I haven't seriously injured myself and move on.It's so powerful and satisfying to be "in charge"when we feel  a pervasive sense of loss.I know loss and strive to gain strength by being in a place with people I trust and love.I read with difficulty,in view of optic neuritis,work out,go to the movies......take care of myself,as should you.I hope this helps you.

Jeannette

 

8/15/09 4:59pm

Thank you Jeanette.  It's one of the things I'm working on.....taking care of myself, instead of others all the time!

8/15/09 5:53pm

Hi,

 I am sorry if my response was too simplistic.I fight so hard and can identify with your feelings.My parents were Holocaust survivors,so I have dealt with loss,in all its expression,physical,emotional....and so know that you are not alone.I try deeply to find the "good"in life.We all live at the " mercy of the moment"as I call MS.We fortunately or unfortunately are more prepared than most,as we have experienced acute loss in all its expression.BE well in your total all encompassing,spirit!!

Jeannette

8/15/09 1:36pm

There are many of us Limbolanders here, all going through what you're going through to some degree. MS isn't as easy to diagnose as you would think. It looks like a weird collection of symptoms that varies from person to person.

 

I would go for all the testing that your doctor can set you up with. If you've already done all that, I would suggest putting together a detailed symptom log of past incidents that could be related as well as new issues that come up. Keep that handy and take it in when you go to see the doctor. Be open and honest with docs.

 

While all that's going on - please take care of yourself. Get a flu shot when you're due. Take your vitamins. Exercise and get some fresh air and sunlight. Eat right. Ask for help when you need it.

 

Stay in touch,

KJ

8/15/09 5:01pm

Thank you KJ!  I think a symptom log is a great idea.  Especially since I now have all this time on my hands!  I also think I've been having "flair ups" for years, but was misdiagnosed, so maybe a symptom log will help piece it all together.

8/16/09 8:56am

Hi Lady in Limbo this diease can really suck the big one, and I am so sorry.  Ok I am going to repeat my again and I am sorry.  If your insurance runs out go and apply for Medicaid at your local social service office do not go on Mon. or Fri. those are usually their busiest days.  Apply for food stamps, and this is for anyone out there having a hard time, with the ecom sohard now days it is not hard to get them.  At leat we can eat, you can buy anything that you can eat.  When I use to activate the cards, you do that yourself now, I told one young lady she was crying go early in the morning when no one was at the store, she was embrassed, go figureUndecided her tax dollars paid for them.  It is a start I hope it helps you out.  sherry/smomdukesKiss

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By Lady In Limbo— Last Modified: 10/26/11, First Published: 08/15/09