Saying Goodbye

[Hope38]

I just wanted to thank all of you for your support thru all of my testing.  A big thank you to Q also who has helped me thru all of this medical information.

I'm done with Drs, they don't think I have MS, more than likely I don't.  I don't seem to fit in here, seems everyone has more problems than I do and tests results to back up your symptoms, unlike me.

I didn't just want to drop off the board without saying thanks.

I wish you all the very best.

Lisa

[Nanners123]

I am very glad to hear this. No need to apologize at all. All of us care about you and how things are going.

I agree with you about the undiagnosed board, I felt the same way when I checked it out. I thought I would suggest it just in case you had not stumbled on it to form your own opinions. I am glad you did.

Thanks for sticking around!!

N

[Hope38]

Hi Nancy........I do spend time on my Fibro boards, they help a lot too.  Many on there go thru a lot of what people are dealing with on here.  I remember when the Dr first said MS to me....I wen't on Webmds message board for MS, and found people after people who were first DX'd with Fibro and later DX with MS.  I didn't think much of my Dr saying lets rule out MS, then find others like me who had Fibro be told umm no you have MS.

I think that is why I came over to this board.  Everyone over there said I sounded exactly like them.

I have read many on the Undiagnosed board, this was before I ever posted or read this board.  There were so many different topics on there that I didn't think I'd get many responses.  I did however reply to a few to let them know they weren't alone when it came to "being dizzy".  Seems like thats the only thing I could help anyone on over there.  So I helped, just didn't post about myself.

I have been in a huge "flare" this month, memory shot, weird body sensations, and PAIN.  I think thats why Im so frustrated.  When I'm not in a "flare" Im more level headed and patient.  When these hit I want relief and answers.  Hopefully this will pass shortly, its been since the 4th of august.  Went to pain management and he did the Fibro tenderpoint test ( I HATE those)  He gave me a brand new pain in my neck.....hasn't gone away since then and it thru me into this horrific flare.

So I apologize if I come across as needy or impatient.......its just my "flare" talking.  I will be more level headed once I come out of it.

Lisa

[Nanners123]

I am very sorry that you are having a difficult time being diagnosed. I hope you listen and take to heart all your friends here who are encouraging you stick around. I dare say that none of here are reading your posts and thinking that you do not belong. I believe we are all where we are supposed be--we may not know why just yet.

Please consider sticking around. Also, I wonder if you have noticed that on this forum there is a thread entitled Undiagnosed Symptoms? Perhaps you can share your time between here and there and see what happens.

As an aside, I have just went to my appointment with the guy that blew me off last week. He did the EMG and found some nerve damage in the ulnar nerves of both hands--I really have no idea if this takes me into another direction for Dx. He really gave no clues. He said to where two wrists splints at night and two elbow guards during the day and come back in six weeks and he will check my Sx.

I asked him if he read the history and timeline I wrote. He said he did not then proceeded to say he was much too busy but promised to read it on the weekend. That was his last chance. I went and visited with my PCP and expressed my frustration. He encouraged me to see a neuro that he claims he has heard good reports from patients on. After this he will be happy to refer me to a MS specialist that is in my area if needed.

I really have no idea what is going on with me, but I am grateful for all of you on this board who have a great heart and listening spirit. I have gotten so much helpful information I cannot even begin to say. Please consider sticking around.

Nancy

[Hope38]

Jon,
I was never tested for Chronic Fatigue.......but I do have a DX of Fibromyalgia.  The only symptom I have that can't be Fibro is the vision in the hot shower.  I tend to think people like me with Fibro also get the Chronic fatigue too.

floridamom,

I'm lost and confused.  I have had all these problems for 10yrs off and on.  The first symptoms started and lasted almost an entire year!  Its not until I became pregnant with my last child that I started to feel better.  Years later here it is again!

I do thank you for caring and your support.
Lisa

[JonM]

Have you ruled out Chronic Fatigue / Fibromyalgia?

[floridamom2]

I totally understand where you are coming from and you actually have more clinical signs than I do.  I have had my symptoms since mid May and have had my neuro tell me in no uncertain terms "you do not have MS!"      

I feel for you!  I am going to see another neuro on Friday to have the additional testing done and then if symptoms continue and nothing else shows up, I am hoping to be referred to a MS clinic.  

The problem with all this is it is so hard to keep going about your days not knowing why you feel so crumby and feeling like things are hopeless.  I am truly sorry you are going through this.  Don't doubt your conscious though, you know your body and you know there is something wrong and that it may or may not be MS.  It takes alot of energy to fight for a Doctor to want to find answers for you and when you have barely enough to make it thru the day the task can seam daunting.  

Hang in there and know that we all want to help you find some answers.  Thanks for sharing where you are truthfully, it seams that I am in a similar spot and needed to hear what you all have said along with hearing myself.

Take care!
Kristin

[IUMOM2]

I'm sorry for all that you are going through. Please don't feel as if you have to go. You belong here because you have some symptoms that are suggestive of MS, yet you don't have a diagnoses.

Sometimes I feel as if limboers need a board like this just as much, if not more, than someone who is dx'd. It's hard for others to understand an undiagnosed illness, unless you are living it too.

You may or may not have MS, but I do believe that some illnesses can take time to develop. I'm not officially dx'd, but I think I'm close. In the three years time since I first got sick, I have had more and more tests turn up positive. Early on that was not the case.

Hang in there. Don't give up looking for answers. And, keep coming here, OK?

:)

[Hope38]

I was told that the 3 foci in my frontal lobes are NOT where MS is ( I don't even know what foci means!)........also that I do not have the symptoms that would come from these foci.  I have no idea what symptoms would come from this area.

I'm in so much pain from my head to my feet, I feel so weak I can barely make it to the computer to the couch today.....and I'm beyond exhausted....If I walk 10 feet I need a nap!

My patterns don't match anyones.  I do not want to take up peoples time if there is no need for me to be here.  If I had MS then I would feel like I belong.....heck even if I had some reason to think I had MS then I would feel like I belong.

I don't know where I belong.

Lisa

[Quixotic1]

I certainly know the feeling of "being done with doctors"  I went through it myself and cancelled all my pending consultations.  But, don't "be done" with your friends!  You're still among the great "Undiagnosed," we're already bonded to you and you have so much to offer and clearly need the support.  Yes, you're neuro was a jackass, but I'm proud of you for hauling him back and demanding that he "look at you"  and be rational.

Stick around, help us out, chill for a while, and when you're ready we'll try again!  About the question of whether to follow the"evil" neurologist's recommendations or find you're own.  I strongly suspect some doctors "forewarn" the next one and try to sabotage the realtionship.  This way they can feel justified when that visit doesn't turn up anything.  I say, move out of this doctor's path of influence and find an MS specialist who is in a clinic which is a member of the (International) Consortium of MS Centers.  I can point you to the list if you want.

But, do that when you're ready.  I still think your nuero is an anit-smoking fanantic and is willing to let his medical judgment take a back seat to crowing out his opinion.  You're well rid of him, but I hope not well rid of us.

Take a break if you want, but stay with us, please.  Quix

[Momzilla]

Wait!  You can't go that soon!  I just replied to your other post!  Wait until you see the next doctor to see what she/he says.  You've got SOMEthing going on.

Take care.  Stick around.  Wait at least to see what Quix has to say?

Zilla*