LymeNet Flash: People who couldn't walk / my niece w/ lupus

This is topic People who couldn't walk / my niece w/ lupus in forum Medical Questions at LymeNet Flash.

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Posted by HEATHERKISS (Member # 6789) on :

This is an email from my niece who won't investigate lyme but still has no answers.

HELP!

Does this sound like lyme?

Her email.............

> hey guys! well, I know everyone this email is going
> out to aIot of people I haven't spoken to in a
> really long time. Life has a way of getting too
> busy until something slowly crawls into it that
> makes life hault suddenly. Unfortunately I am
> writing because that is what has happened to me and
> my family.
>
> Most of you know all know that I have been
> diagnosed with fibromyalgia and with lupus or
> basically some sort of connective tissue disease
> along with several other diseases that hide behind
> the big ones. Please understand that in no way am I
> writing for sympathy or pity but I am writing for
> prayer right now. As most of you know I am no
> church going girl every night....hehehe we have had
> amazing times! but I do believe in God and the
> ability of Prayer and spirituality. Yes when Mom
> can drag me out of bed on Sunday morning I do go to
> church. The past few months I have lost alot of my
> coordination. It has taken many typos and a
> llllooonnnngggg time to write this email. As my
> journey to find a new job in my life that would
> really make me happy and work with my health
> continued I continued going to the doctors. Very
> quickly I kept falling, speaking unconsciously and
> doing many other out of my character things. My
> last fall was upstairs in my apartment...with my
> roomie
> in the hot tub....some roomie I tell you! hehe she
> knows I love her! well that fall was in the hard
> cement floor and no one could hearing me screaming.
> Thank God I had the energy to crawl my way to the
> phone to call my parents downstairs. They came
> right up to check me out and to basically carry me
> to my bedroom because I was unable to do it myself
> not just because of energy but my legs didn't know
> what to do. The next day my parents demanded to
> take me to the hospital after basically being
> unconscious all day and having no clue they were
> trying to call me all day to make sure I was okay.
> Okay I am getting to the end because my hands can
> not do much typing. After a few weeks of hospital
> horrible time or as we call it vacation for the
> brain and doctor after doctor I found out the lupus
> has begun to go into attack mode on my brain. Right
> now we don't have information but this: my brain
> waves have slowed down, I drop alot of things, I
> mumble and sometimes can't speak
> and walk on and off right now with a cain if at
> all. My family is working hard to work with me with
> all my doctors. I have been told I most likely will
> be giving up working for my life because my "brain"
> and body can't handle it.
> This hit me so hard I could not even talk about it
> with my parents but simply allow myself a few
> minutes of tears at dinner in front of them and
> talking with my roomie about it that night. So, now
> we are all left to figure out how to be this new
> family who has to adjust to taking care of me
> because I am losing more abilities that I have ever
> thought I would. But, I am still the funny amazing
> blonde chick oh did I mention single? hehe...but I
> basically summed all this up for everyone for two
> reasons: First, I am asking everyone for prayer
> because WE strongly believe in it as a family and
> everyone knows how much our family has changed!!! I
> don't ask for anything from anyone just pray for me
> because I know after we figure out all this with
> doctors and of course disability that with prayer I
> can fight this and do these horrible exercises that
> I whine everynight while doing them as I try to
> strengthen my brain, eyes, speech, and leg
> coordination. We are all so confused
> right now on how to proceed since I have never been
> this bad with my health. Any suggestions or helpful
> hints about SSD are definetly also welcomed [Smile]

> Okay, so the second thing is this: sometimes when
> I talk if I am in one of the modes I will speak
> either incoherent or mumbling or not making sense.
> But, a simple phone call to say "hi" is really good
> too. Sometimes I feel great and then I go into this
> mode. We are still working with the drs and support
> groups to guide us along the process. Alright my
> hands need a rest now so I am going to go. Until I
> get a little more stable I am staying downstairs
> with mom and dad so you can reach me on my cell
>0000000000000000.
> Or you can just call my apartment still and annoy my
> amazing roomie [Smile]

Please remember us in prayer and
> your thoughts because life is really hard right now
> esp without my total "brain" lol....... LOVE TO
> YOU ALL!
>
>
> p.s. a great website to help people understand
> this disease better is

http://www.butyoudontlooksick.com

> alot of fam and friends and better understood me
> with the spoon theory [Smile]

>
>
>
> J

Posted by Lymetoo (Member # 743) on :

Sheesh. I hope you can convince her to get tested!!!!!!!!!

Posted by HEATHERKISS (Member # 6789) on :

I keep giving the information on MDL and Igenex. I've also given her Dr.s names and numbers.

I've read about people who fall and their legs don't work......... sounds like her.

Also I was dx w/ Lupus. And now I don't have it.

Posted by bettyg (Member # 6147) on :

MS is also a strong possibility due to all her falls as well as lyme.

I agree w/Tutu on getting western blot testing done on her.

SSDI/SSI --- go to Treepatrol's newbie links; find MINOUCAT'S DISABILITY INFO and I posted a lot there on my detailed ssdi 5 years of hell getting mine approved.

There too is DISINISSUES, have her sign up or you sign up for her & you can review the files/links to help her best.