SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Received as dx - no longer in limboland
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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Received as dx - no longer in limboland

Well 12/13/11 is the day that has changed my life forever -  I officially was dx with MS.  thought I was prepared for the news but once she told me I was shocked at my reaction, guess its hearing those words  - am a mix of emotions -  glad for an answer, mad at having to live the rest of my life with this, sad because it is going to change so much of mine and my families life - telling my parents is going to be one of the hardest things I have ever had to do - We are discussing DMD's and my Dr is very positive - but it is a daunting concept to say the least - I have never been sick and rarely take aspirin how is this possible but it is and I will have to deal with it every day.  The only good part of this whole thing is that I found you all and have friends to talk to who are dealing with the same things!
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7 Comments
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1627868_tn?1333889942
I am at a loss...I am really happy that you got a dx, only because now you can get the treatment that you need/deserve; and also because you no longer have to spend so much energy trying to figure out what's wrong.

I am soooo sorry that you have to go through this, though!  Please know that you are not alone!  I wish I could jump through the computer and give you a big bear hug!  But instead, I'll have to settle for a big virtual hug!
(((HUGS)))
Sarah
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1530171_tn?1362547225
Hey Jacksmom516
It is something difficult to digest for most people when they receive news like this, even if there was some prior preparation.
It is even more difficult to deal with serious illness when you have not been seriously ill in the past.
Hang in there though,as there 's potential for complete recovery!
I do not want to give you false hope, but I do not buy into the conventional
medicine philosophy of perpetuating serious disease by offering disease maintenance programs- like medications for symptom management ,usually for life with very little or no expectation of cure. Actually when was the last time you heard the word "cure" from a medical doctor? It seems Taboo, yet the word "Treatment" giving the "illusion" of cure, has become
as common as the medicines prescribed to deal with pain.
I think outside the medical box, and sometimes, as I do express my frustration with the limitations and dysfunctions of the  medical system,
I may upset some people who do not share the same philosophy as me.
And this is O.K. If I 'm able to help only one person regain or improve their health-where otherwise he/she would remain in the same disease state
or worse, then my purpose has been fulfilled!
It is very nice to see the support and friendships here. It is great to have it
in times like now.
Should you want support in the form of holistic and alternative advice for MS, let me know.
Stay true to yourself and strong! You are the same person distinctly separate from the condition you've just been diagnosed with!
Wish you well.
Niko
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Hey There,

I am sorry to hear of your dx. but so glad that you now have an answer and can begin tx. I know you are going through a bag of mixed emotions. We are still here for you...that will never change.

(It's funny, I have not quite had this same reaction yet...or maybe it is coming for me..I knew deep in my heart it was MS so I think I accepted it along time ago..I just needed the right doc to validate it for me..

My thoughts and prayers are with you..always. I hope if anything this will bring you peace and courage to move on to the next step of treatment so you can accept and move forward...

Blessings and hugs to you...

Love Jibs
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1760800_tn?1406757051
You know I am glad to have a name for the sx but sad that this disease is going to change so many things about my life - I am moving forward with treatments - of course insurance needs to pre-approve my drugs  - hello if Dr says I need them then I do!  Apparently they must think I will enjoy giving myself a shot every day!  

Anyway - do not know what I would do without you all and your support it is a lifesaver for me each and every day!  I have not told may people waiting till after holidays - but even then while they will mean well they do not have any idea what this is like and everyone here does.

So thank you again

Love
Tracy
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1475492_tn?1332887767
Hey girl,

I am so sorry to hear this news but, like others, know it is good you can move forward with treatment, relief and the ability to know exactly what you are fighting!  

We are here for you Tracy. Take care of yourself.Try to focus on the positive.

(((Hugs)))
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sorry to be late in responding to your news, but i just wanted to add my support as well.  i think following your dr.'s lead by trying to stay positive is just about the best medicine at this point.  i sincerely hope you will stay connected to this group so we can keep track of your *successes* as you move forward.

blessings to you for a peaceful holiday season, tracy.

binx/IWC
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1760800_tn?1406757051
Thanks all for your thoughts -  I will absolutely stop in here -  It has been an overwhelming week to say the least -  Am starting on Ampyra tomorrow and then we decided on Avonex - will see how it goes with side effects and giving myself shots.  

Also starting PT tomorrow - will only be able to go every two weeks or so due to cost but I will have to be diligent and do my exercises at home -  

Sometimes I just stop and say to myself  "I have MS" how did that happen but I do and from everything I have read I need to keep moving, a positive attitude and surround myself with supportive people and that is just what I have found here - don't know how  I would get thru this without you all so again I say Thank you and Happy Holidays to you all.
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