UPDATE: my LP results are in.....

[Ulanie]

hi- sorry I haven't written till now, but the effect of my LP lasted a bit longer than expected. i had it done on the 31st and now starting to feel a bit better and trying to sit up.
My neuro called me about 5 pm yesterday and said the results were in for my LP. I was expecting 4 weeks, but hey, don't knock it right?
well, it came back clear for MS. the fluid was clear too :o) My nuro then stated that i have recieved all tests that we could do on a neuro scale, so he felt firmly that it could not be MS. I am happy about this, but still don't know whats causing the symptoms..a little depressing as well as happy for the  results.
I guess i'm back to square one on a diagnosis. the funny thing was, the symptoms seemed to subside this past few days until today when i tried to sit up and function. it could be the caffine, or pressure from sitting up? or the stress from the dr's non/ answer.... i don't know but they are all comming back again all down the right side. it had been nice the past few days with the minimal original pains. but don't get me wrong, i did not like the LP. AT ALL.
the headache i have has is compared to the pain of child birth or a kidney stone ( one of the worst pains ever IMO) or appendix pain ( mines out).
well, that is about all for now. I'm just trying to have an optamistic approach to all of this chaos. I will make another appt with my PCP for the next idea on the list, i have no idea though if it isn't neurological then what could it be?
IDEAS???
thank you to all who wrote me in the past few days checkin up on me. it is so nice to know people care :o)
Ulanie

[Lulu54]

Loni,
If it would help there is a disease checklist on the repository site for the Accelerated Cure Project.  While this is intended for study participants, it might be helpful for everyone to print a copy of this and record their family history.  This might jog your memory


http://www.acceleratedcure.org/repository/downloads/ACP_CRF.pdf

pages 20-26 have all the check lists for family disease history - I have to look up a lot of these!


Wow, you have been through a lot of changes- so good to hear most of them are positive.  Congrats on being tough enough to quit smoking (I did tht last year), raising a toddler, and turning your back on TV!  That's quite the trifecta!  :-)  

my best,
Lu

good luck,
L

[Ulanie]

Lulu, Alex, Pastor Dan, and Wanna :o)-


Don't wory Lulu and Alex, I'm not going anywhere, everyone on the forum has made

me feel more impowered in this situation, so you can't get rid of me either :o). I have

spent hours looking at the site you gave me Lulu, still putting pieces together to see

what is possible into my family history.. believe itor not, both of my grandfathers died

of complications of intestinal/stomach cancer ( spread into the body) both at young

ages.I have a great-aunt with Addisons, thyroid problems in at least 3 of my

immediate family members inc. my mom, grandmom, cousin,Cancer in about 1/2 of my family, and benign growths in bout the rest.  I am not too close with

most of my family, but am trying to put anything in a list.

Pastor Dan, thank you for the prayer.. funny how many of those lists i seem to be

popping up on... lol.I can use all the help i can get.

Alex, i did not do all of that and not have an answer, my answer was no. We don't

like the answer, but it is what it is, and I'm at least glad that i can rule out quite a few

things. Now just have about 300 more things to rule out and i'll see if i can't get it by

december ( when my ins. out-of-pocket start over)- try not to think of it as defeat, but

a victory in the "rule it out" department.


Wanna :o), thanks for the encouragement, I hope to see if my PCP and figure out

where to go next. I am still having the original problems, but at least the LP headache

is starting to subside ( bright side), i will add lupus to the list of could be's and see

what he says.


I am also having my Merina removed next week, just incase it is causing this.I know

it may seem like a stretch, but i have found quite a bit of evidence on symptoms

close to mine caused by my IUD, so might as well rule it out and see if the

symptoms change or not..if i'm willing to let them do a LP, i'm pretty willing to see

and try about anything to get relief.


I have ( in less than 4 yrs) quit smoking ( CRAZY), used to drink a pot plus 4

espressos a day, now i'm lucky if i get 1 cup every 3 days, i don't drink soda ( haven't

had one in over a month, and about 3 mos before that), gave up little debbies ( used

to eat 10 boxes a week (no kidding), I rarely eat sweets and chocolate anymore, i

used to eat LOTS of sugar..

I quit most of it the week i found out i was prego w/ Delaney. she'll be 3 in sept.,

I was told for about 11 yrs before her, yes very young, that the odds of me having a

child were about null, then the mo i moved out of fl, boom... became a mommy.

morning sickness started the day AFTER CHRISTMAS.

the only thing i wished i did more of was excersize, but it seems impossible chasing

a kid all day to find energy. BTW, we don't have reg t.v., only netflix, internet, but  no

bunny ears, satalite, cable, we found we didn't have enough time for life and tv, so

gave up tv... we do more around the house without it. my hubby plays drums, so he

gets to spend more off time with them and us...

well if you can think of any other things it could be ( or anyone for that matter, please

inform me so i can add them to the list)

I feel that i have told you half of my life story, sorry, but i think it helps with the kind of

person i am to come up with more ideas. .

Feel free to chuck em' at me :o)

thank you to all for the kind words in my time of need, you have no idea how a little

note from one or more of you got me through this depressing time.

All 4 now,
Loni aka Ulanie

[Want to feel well!!!]

Glad to hear you do not have MS, but you need to get to he bottom of what is causing your symptoms.

Diagnosis Road can be long and frustrating, but once you get help it makes the struggle worth it.  Once MS was ruled out for me, I eventually was sent to a rheumy at the CCF, who finally sorted everything out and started treatment.  I was first diagnosed with Undifferentiated Connective Tissue Desease (UCTD), but now Sjogren's/Lupus are more defined.

I do not know if what you have is an autoimmune disease, but it seem like that could be one possibility.  Have a good talk with your PCP and be an advocate for yourself.

Good luck to you and wishing you wellness...soon!

Wanna :o)

[PastorDan]

Thanks, Lu, for that link.  Still mystified, personally.  If I don't have MS, I'd have to have a half dozen mimics to come up with my symptom list.

Ulanie, I pray that you find both answers and relief.

[HVAC]

Sorry you had to go through so much and still do not have an answer. Yes stick around.

Alex

[Lulu54]

There's a great list on this website to cross-reference symptoms that act like MS - check it out at

http://www.umm.edu/altmed/articles/multiple-sclerosis-000474.htm


BTW, just because you don't have MS doesn't mean you can leave us that easily!  LOL

be sure to stick around - we know lots of things besides MS and are more than willing to help.

I'm glad you can cross MS off your list for now........

Lulu

[Ulanie]

I have not had a rheumy dr. I have only started with my general, women, neuro,chiropractor, and eye dr. had enough yet? LoL ( going on 8 months of symptoms)
i am going to write a list of possibilities for my gen dr. to see what he says. he's a nice guy and good for a gen dr. i like his straight forward approach to things to get them done. if it were up to him, i'd be fixed by now.
I have to bring him up to date from the past 2 weeks of crazy, but i hope to come back with some good ideas for him.
I appreciate all help in finding answers, sometimes someone else can see outside the box better than yourself looking in.
thanks again  for the idea...
Ulanie

[Deb61]

It is good news that you don't have MS--yeah!  I'm very happy about that.  I do know, however, that it is frustrating not knowing what is wrong when something clearly isn't right.  Have you seen a rheumatologist?  With the joint pain that you mentioned in your first post, I can't help but wonder if your problems aren't related to a rheumatological disease like lupus.  There are also other autoimmune diseases can cause neurological disease that a good rheumy could figure out.

Deb