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Posted 2/8/2008 10:02 AM (GMT -8)
Hey Everyone

I got my results back over the phone just now. All was normal. Pressures and protiens and anything else they tested for. I'm a bit of a mess right now. I'm very sorry. I am so happy it's not ms and that it's not anything other than ms...but i'm so so lost at this moment. I have no answers...many symptoms...and no where left to go. All testing has now been done...there is nothing else they can do to find my answers. I'm so sorry. I know this seems so utterly rediculous to be upset over good results, but after two years of all this crap i'm just so sad. I have no recourse. No other tests and no way to know what battle i'm fighting. Please forgive my silly emotional response and know i am not in any way seeing this as the worst thing in the world. Having ms would be a terrible result, but i am just absorbing the reality of staying in limbo after such hope recently of knowing ANYTHING. I love u all and so so appreciate all the support and love u've offered me. For now i need to figure out what to do with myself and this.

Posted 2/8/2008 10:31 AM (GMT -8)
Hi Rhonda. I'm so sorry that you are having to go through this...the not knowing is the absolute worst. Please forgive my ignorance but I've only recently been posting on this forum, but there had to be some reason they thought you had MS, right? Did they start you on any medication or have they just been doing testing for the past couple of years? I don't know much about this dreaded disease but my neuro did tell me that the spinal tap doesn't always show results... I guess it is very difficult to dx MS, kinda hit and miss at times, rule out what you don't have...

Again, I know I'm not much help, but wanted to let you know that I will be praying for you and hope that you find some type of resolution before too much longer.

Blessings,
Teena
Posted 2/8/2008 10:53 AM (GMT -8)
I'm so sorry, Rhonda! I was so hoping that you'd get some concrete answers to what is ailing you. You surely have every right to be sad, to grieve, to ponder for awhile where to go next.  I think though that you are strong, and will gather up your inner reserves and work through this. Take all the time you need...and then..somehow..life goes on.

Posted 2/8/2008 11:29 AM (GMT -8)

Hey Rhonda,

 

I know that state of mixed emotion well from my own experience. As your friend, I feel both relieved and frustrated to hear this news. I so want you to find some answers and relief, and I do understand that at a certain point even bad news is …news, and a place to move forward from. Please don’t be sorry or feel guilty for being upset over this; I think many of us have been there.

 

There is something obviously wrong. You do have a dx of ON, so that does explain part of it. That is something concrete and objective (not solely sensory sensations a doc can’t “see”) for the docs to work with. I know you are really discouraged, but I hope you will follow up with your eye doc and a new neuro anyhow at some point.

 

Please take good care of yourself in the midst of this, and know we are here for you.

 

Sunny

Posted 2/8/2008 12:27 PM (GMT -8)
Rhonda,

 

You poor girl.  Limbo sucks.  I too am glad at this point you don't have MS, but can totally understand the frustration you are going through.  Sunny is right, you have a concrete dx of ON, start a file of symptoms and results of all your test.

 

Take time to absorb the situation you are in.  Remember NOT having MS would be a good thing.  Only time will tell what all your symptoms lead to, it may be too early to detect the lesions.  My Neuro thinks that even though I was only dx 8/07, what I have had for many years may have been MS all along.  That probably doesn't help your frustration, that is not how I meant it.  I just meant that even though I've had some flares, and symptoms all along, nothing so bad on most days that I couldn't cope.  And I found all my cyber friends here who understand, can relate and support me, just as we all try to do for you.

 

Take care friend, come back and vent, mourn, and then maybe have a big bowl of ice cream.  HAHA

 

We are all here for you.

 

Hugs,

Debbie

Posted 2/8/2008 2:11 PM (GMT -8)
Hey Everyone

I've had some time to absorb this and look at where i'm at Thanks so much for u'r replies!!! U'r all so right...limbo sucks and not having any answers is frustrating...but i AM strong and this is only a speed bump. I first decided i was not going to see anymore docs for eval. No more tests, no more worrying about ms. Well that's silly. I've been thru them all...i have a base of apparantly normal test results. If i'm going to moan and groan about not having any answers then i have to be willing to seek those answers without regard to time tables. In short....i need to suck it up and keep going. I WILL get to the bottom of this ... eventually. Until then...thank u all for being here with me and for holding me up when i go stupid.
Posted 2/8/2008 3:30 PM (GMT -8)
AWWWWWW Rhonda,

   I am so sad that you did not get any answers, but i am so happy that they say no to MS. I know it is frustrating. Do not give up, ever, till you get answers. I must have went to what seems like a thousand doctors, but your bound to stumble on one that has some experience with this, or read about it, or went to a seminar on it, something. I stumbled on a 65 year old rhuematologist and he knew immediately what was wrong. So you never know. He did such an extensive exam, asked me a million questions, spent a ton of time with me. I know you will find yours, i know it, but you have to keep at it. You are in my thoughts and prayers.

Love

Lynn

Posted 2/8/2008 4:18 PM (GMT -8)
Hey Rhonda,

I am so sorry that you didn't get any answers.  I am happy that your LP didn't show anything serious but I can feel your frustration at not knowing anything more.  You have some serious symptoms.  You have very right to feel the way you feel.  Just know that we are all here for you.  Hang in there sweetie.  Lean on us as much as you need. 

Much love always,

Posted 2/8/2008 7:13 PM (GMT -8)

Rhondab,

I'm very excited for you that your LP was normal.  But I know what frustration you are going through.  Hey, its been 7 years with my symptoms, I never had an LP, but everything is normal.  Maybe we just have hypersensitive nervous systems, who knows.  Anyway, CONGRATS!!! yeah

Take care, Jen

Posted 2/8/2008 8:42 PM (GMT -8)
Rhonda,

i in no way mean to undiagnose you. However ON can haappen as a one time event, it usually isn't as persistant as yours has been .

Also there is no conclusive evidence for the dx of Ms unless you are a totally classic case. Before Mri's they relied alot on the evauations done in the clinic. Have you had evoked done yet? These cannot soley dx it but most assuredly can spot problems with they eys/ ears/limbs.

Also as far as lesions as uppity said what one will read as none another will see as one. I do get that as of now u have no obnads but i was told that in order to ensure it was a clear reading the lumbar needed to be done while in eopisode.

I guess what im saying is this: your symptoms are coming from somewhere. the ON gives us a clue as to which direction to look in, however it may not be MS. I Do want you to realize that this is exaclty why we call it Limbo Land!!! Many have been through this.

At my last appt at a large clinic they were not interested in obands nor lesions as my clinical presentation along with evoked's from past and On for 3 yrs was a give away. They made mention that theyd learned alot and the criteria would be changing again soon. My husband even asked, during her next attack should i get her a spinal? they said Why put her through that? We have just diangosed her and this is her second time of diagnosis. Sometimes lesions arent all the tale tale, neither are obands, altho in classic cases and in a longer course of disease they both do end up showing. Scarring (sclerosis) can be delayed and depending upon who you ask it can be delayed by 3 months or 3 years.

I in no way wish to say that you do have MS, but i do want you to know that this is what many of us went through in the beginning: LIMBO, until some sign gives it away. I think your eye doctor knows the scars he's seeing in your optical nerve are not a one time thing.

I truly hope you do not have it, but as one doctor said to me, "with all of your other symptoms its more than likely"

Also Rhonda, in the beginning what i felt wasn't visable to them. The pain and jabs and all sorts of sensations. So I got looked at like a dummy lol. Now they see my fingers twist and no longer do they have that look. I pray that this is NOT it, but please rule out a B12 deficiency as it can present like this and also any kindney tests (blood draw, 24hr urine, dipstick) as it also can mimmick some of these things.

Either way Girl do NOT apologize. I took that red danged bracelet off and on for 3 yrs until i could wear it without guilt from a doctor snidely asking me why i had it one. (sheesh).

you have supported us and we will support you. You have neurological things happening---that much we know. So lets go with what we know ok? You do have on and you have Sensory type of things in your body.

Rule out b12 and lets see what happens next ok?

(((((((((((((we are in your corner))))))))))

thanks

kiera
Posted 2/8/2008 9:00 PM (GMT -8)
Rhonda,

IN case i was too emotional on last post pls allow to reiterate.

Go with what you know:

You have ON, ask and be very concise with your ortho of how much scarring does he feel he's looking at in this eye. Several attacks? On going? One time even (this will come into play later).

List all of your sensory symptoms chonoligally and make certain that even if they are hard to explain use YOUR OWN WORDS, do not attempt lets say to know your left hand is continuously falling asleep then write down Parathesis (let them be the docs---it helps)

Any heat senstivity?

List what you know Ronda and no matter what the dx is it will follow this very pattern that you yourself have created. Your notes may lead them to what you do have, whether that be Ms or NOT....sometimes (most often) we leave out what we think is a simple thing, only later to find out it was "the missing link".

Your Gp sounds great, ask her opinion about where you should go from here, given that this is far from resolved. Also ask her if she did infact rule out b12 deficiency? if yes,then great. if not..then you need this done pronto!


Either way Rhonda we know your not a hypochondriac and we know that you have a real problem and are willing to see you through until you know what it is and then remain with you as you develop copng skills of your own.


Your not the first that came here limbo and left with MS. But again, there have been some thinking MS and left with a more logical answer.

Do NOT stop ,,,youve came to far.

Prayers for you!


kiera
Posted 2/8/2008 9:26 PM (GMT -8)
Dear Rhonda,
As a fellow Limbo-ian, I feel your pain. It is cruel to have no answers. Everyone here makes so much sense. Kiera articulated the situation perfectly. Some people take years to get a diagnosis. "We" are those people. This board needs people like you and I to remind others that for many, a diagnosis is a lengthy, difficult, sometimes subjective process. Limbo-ians need the most support of all. And you are so wonderful at ministering to all of us here. Now it is our turn to look after you.
Annie
Posted 2/9/2008 11:14 AM (GMT -8)
Rhonda,


Stick with your general practitioner. Mine was exaclty like yours. Turn's out she is exacly how i got my diangosis, well she was the avenue.


She ran ton's of bloodwork (like yours is) and in the end of all the tests she could possibly do she said, Honey, im satisfied, you are 100% neruological. I cannot help you but I can get you to someone who can...she sent me to the Neurological Institute. I wouldn't be at all surprised if your gp considering she forewarned you of all the blood work isn't thinking along these lines as well.


Keep your chin up Rhonda i know it hurts, but the truth will come out!

When Ms first became evident. It was thought that it was a Man's disease. Any woman who complained of the same symptoms was then diagnosed with "Hysteria".

Makes you think doesn't it?....


thanks

kiera
Posted 2/10/2008 8:35 PM (GMT -8)
Rhonda I know exactly what you are going through.....It took me 6 yrs to get a dx. I had "state of the art" tests nothing. I had 2 neuros in disagreement over it I was poked probed and tested until I didnt think I could take anymore. But my pcp sent me to eye and ear hospital after an 8 hour day of tests the dr. asked me if anybody ever mentioned ms. Of course I snapped yes and they said I dont have it...He said they need too look again.So I was sent to a neuro in the city he agreed with my pcp the eye and ear dr. and the other neuro who said it was ms.Rhonda you will get through this may take a while but ------------------Dont give up on finding answers.Is amazing the inner strength you find when you cant get answers and you know something isnt right and you dont feel good..Stay strong and keep searching for answers...........Maybe it is one more test that will give you the answers..........Hope everything works out for you.Hope you get your answers.Take Care and Stay Strong you will survive the limbo ride that many of us have taken ....barb

Posted 2/11/2008 4:36 AM (GMT -8)
Hey Everyone

Wow, thanks for the ideas and suggestions everyone! To try and answer some of the questions/suggestions, let me say that i have been tested for B12 and that's normal. In fact maybe it'd be easier to say i've been tested for all the normal/usual suspects and everything has been normal. I've been scanned/mri'd/ct'd everywhere! I've had blood drawn and tested for everything under the sun including thyroid, which is a big mimicer. I've also been checked for the possibility of this being a menopausal thing. Nothing has proven to be anything other than normal. So i'm just in limbo and that's that. As u have all said, it's no where to be! Kinda like that song...i'm a real no where (wo)man, sitting in this no where land, making all my no where plans. O well...my friends are all here with me and the ride is a bit cushy at times...so i can take it! Thanks guys...u are all incredibly kind and quite a force for fear or hopelessness to reckon with. ;)
Posted 3/26/2008 10:38 AM (GMT -8)
is it normal for my back to hurt 3 days after getting a spinal tap??
Posted 3/26/2008 10:42 AM (GMT -8)

chucha said...
is it normal for my back to hurt 3 days after getting a spinal tap??

That happened to me when I had my last tap done (some years ago). Back pain is a problem -- your back hurts, so you move awkwardly, causing other muscles to seize up, causing more pain...

You probably should call your doctor just to let them know what's going on, and see if they can offer any advice.  Otherwise, I've found alternating heat (heating pad) and cold (ice packs), 20 minutes at a time, can relieve some of the discomfort. I hope you feel better soon!

Posted 3/26/2008 11:33 AM (GMT -8)

Hey Chucha,

Welcome to the board.  My back also hurt for several days after my spinal tap.  You can just let your doctor know.  You got some good advice from Uppitycats as to some management hints.

I know you maybe have a lot going on but in the future, please just post your question once and then try to be patient for a response.  I understand that you maybe scared and in pain but there is limited space on boards like this and we just don't have room for multiple posts on the same question.  Please check out the rules to our board.

Please feel free to ask questions and express concerns and such but just make one post then try to wait a bit for responses.

Here is a link to our rules.  Thanks for taking a look and again welcome.

https://www.healingwell.com/community/default.aspx?f=46&m=106997

Love and prayers,


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