SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Hello! What is everyone up to?
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
521 members
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Hello! What is everyone up to?

Hello Dear Limbolanders!

This forum has been really quiet lately.
Either everyone is doing better or everyone is busy and hopefully it is not the latter(feeling bad or in flares or?)

I hope vacations were relaxing LOL.

I have started back teaching (I'm a TA), just 5 hrs a day with 2nd&3rd graders.
I had taken a year off due to medical reasons and it does feel good to be back in the working world.
However, it has been exhausting but I thank the Lord for allowing me to have my old job back
Praise the Lord!!
My son is adjusting to middle school. Another praise.:)

I will be having new MRI's next month so maybe then I will know if I have MS or what but since I was diagnosed with Celiac a month ago that could poss.be the answer. Time will tell!
This is what is going on in this chapter of my life.:)

Well, I hope everyone will post here and let us all know what is going on in your life.

I'm lifing you all in prayer daily!

Hugs and blessings.
Tammy:)
6 Comments
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956292_tn?1334058469
Hello,

I am so glad you are back to doing what you love...I too have noticed a silence..for me it has been a mix of things...

I have been working like crazy AGAIN...still feeling off so while paying my last MRI bill I popped into my doc's office and made an appointment to check in...I go next week...I need to check in with him as I had e-mailed him with some issues I was having and he felt it was due to the intense heat we were having at that time and possible STRESS I was going through BUT they are still lingering and I am afraid I have been going through a flare...my headaches are back with a vengance...and my left eye is killing me...leg goes numb and face...RRRGGG

I have also quit smoking.......I went to a group hypnotist August 9th....
Well. before you say way to go and congrats..I am sorry to say I relapsed with that too...I fell off the wagon...or whatever you say...I broke down...I plan on talking to him about it when I go too see if the patch is a good idea...you know with all my meds...not that smoking is good with my meds but wanted to check in about the patch and IF it is a problem...can not do it cold turkey and that hypnotist was a turkey too..BUT I did it for a week..so that is something.


The thing is I kinda like smoking...BUT I know it is not good for me SO I am gonna keep trying.

I ordered my Pilate's Kit..Winsor Pilates..I am gonna need something to keep me in shape so I am gonna start that....

Alot going on...wheeewww.

You go girl...and please take it easy and rest when you can!

Hope everyone else is settling into the cooler weather.
Jibs
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1760800_tn?1337789449
Been a crazy summer for me too -  Working working and more working.  Got my first day off Sunday since 4th of July and wouldn't you know it - the weather was chilly and cloudy -  was so looking forward to a day at the pool -  while I can't sun worship like I used to -  It would have been nice to float around and read for a while -  but what can you do.  

Cannot believe the summer is almost over -  this year has absolutely flown by -  It is nuts.  

Hope all is well with everyone out there --

Tracy
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hello,

it has been a whirlwind of a summer on this end, too, trying to keep my little one occupied, with the latter half of it spent in a pretty major flare up for me. school starts next week and i felt a little less toxic during the past couple of days, so maybe we'll get a break??

tammy, thank you for your prayers to those of us in limboland and beyond...  from what i understand, celiac can be an MS mimic, complete with lesions, so it will be interesting to see what comes of your next scans.  i am a carrier of the celiac gene, but didn't not present with the antibodies via blood test.  nonetheless, i have tried to avoid gluten at all costs.  i sometimes think avoiding it helps with my fatigue.

jibby, i have the winsor pilates videos, too.  they are actually really good, but i haven't had the strength to do them, even the modified exercises.  i am sure they will help you stay strong!  and as for smoking, i am a former smoker as well and really, really enjoyed it, so i know it is hard to give up.  i hope your doc gives you the thumbs up for the patch, or provides you with a reasonable alternative.

tracy, how does your work load affect your energy levels?  i hope you are able to find time for self care in spite of your busy schedule, and that another day to float around the pool presents itself before the cooler weather sets in.

blessings to one and all~
binx
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1760800_tn?1337789449
Hey Binx

It isn't easy but I try and get some downtime every day -  with working weekends the rest of the "stuff" of everyday life gets squeezed in where it can, cleaning, laundry, yardwork, food shopping errands.  I have become a very scheduled person so that it all gets done and  I don't sap my strength.  Couple that with PT three times a week for two hours a time and it is nuts but for now I am getting thru it.  My house is clean in spurts, vacuum one day, baths another etc....  I also have a dog and two cats so I try and find time with them also -  I really could use another day in the week, LOL.  But then who couldn't!

I also have windsor pilates and am trying to do it Wednesdays and Thursdays as these are my non-pt days, haven't been very successful lately but will keep trying!

As far as the pool I am off on August 31st and September 3rd, hoping to get a pool day both days and not feel guilty about the other stuff that should be getting done!

Have a great day - good to see you here again!
Tracy
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2012515_tn?1353879125
Jibs-I'm so sorry about your flare!  That just stinks!
Please take care of yourself and get rest as much as you can.
As far as you quit smoking, way to go for trying. When you are ready you can try again.:)   Cold turkey or with another turkey,LOL
It will happen when it is time.

At least you're doing pilates and trying to do what you can and that is better than some of us.:)

Thanks for all of your encouragement you give us here in Limbo.
Hugs and blessings:)

Tracy-I hope you finally took that vacation your work was suppose to give you.  You did, didn't you?
Too much work you know is not a good thing and you have to take care of your self.
Hopefully you will have a day that you can float on the water( when it is still warm enough and read a good book)!
I'm praying for better days ahead for us ALL!
Hugs and blessings :)

Binx- Enjoy what few days you have left before school starts and take care of yourself. Save some energy for yourself.

I'm glad you are taking precaution on the celiac thing because it's a bummer having to change eating habits but for the good it is a hidden blessing.  
I too am anxious to see what comes of the MRI"s. It will be amazing if all of what has been going on with me is Celiac.The Lord knows I'm trying to do what I can with my health.:)
Thanks for your prayers too!
Hugs and blessings :)

Well, It's great to hear from you all. Maybe some other's will post and check in with us and let us know how they are.
May the Lord bless you all with His amazing love!

Hugs and prayers to ALL!
Tammy:)

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