limbo

[Melissa072]

Sorry for being a pain, I'm here with another question.............or 2  lols

If someone has clear mri of brain and whole spine twice as well as a negative L.P. doesn't that make ms more unlikely?
Why do some say that ms was ruled out with a clear brain mri with them?????

I was told  with my clear mri's and neg L.P. that I would be a medical miracle to have ms.........
But I still do have symptons.. even with all the normal tests so far

But the thing that has me stumped the most is the heat thing. Where I had tingling in both feet for about 6 months straight, then it stopped, and now returns in heat, isn't the only thing that will cause this ms?????????????

I have done a lot of reading as I can imagine you all have about ms over the last 16 months about ms, and I have almost every sympton.
Why do some get tingling in heat also but get told its not ms, this totally confuses me, what else would make someone get pins and needles in heat apart from ms.
When I had my lumbar in Jan the nurse who looked after me also had several ms symptons and got tingling in heat and was coming to me all the time to compare symptons with me, and she was also told it wasn't ms.

I've even asked my neuro about the returning of tingling in heat, and he never answers, I don't know if he is trying to protect me, or not scare me, but I'm past all that now, now I just want honest, straight answers, I don't think that too much to ask........

Sorry for sounding so negative, I really needed to vent.............

[Melissa072]

Thanx for all your comments
At this stage I'm willing to take any advice on board.............

Melissa

[Hope75]

I'm right there with Doc72 - we share the same symptoms and I sent her a message earlier about the heat issue, then I walked down and picked up these darn MRI results and found out my machine was only a 1.5Tesla.  I thought it was much stronger!  Anyway, hi Doc and I hope someone can help us:)

[wishforchange]

Hi, don't think we've spoken yet?

Notice you're from Oz, I'm very envious - lived there years back and promised myself I'd emigrate, but never did:(.  Whereabouts are you?

Most of your country is HOT.  You don't need me to tell you that!  Was a big issue for me when I was there, but then I did plonk myself in the steaming centre, half a day's drive from Alice Springs.  Not the best place for the heat sensitive.

Have you looked at the Health Pages as Zilla recommended?  Look at the one on MS mimics tool

SO many things can cause tingling in your feet, including MS but not exculusively.  You need to take in the whole picture.  Sensitivity to heat can be a factor in a lot of autoimune conditions, but also with heat comes for most of us swollen feet.  The problem could be from anywhere, back issues, kidney, vascular.  Try to look at your symptoms as a clinician and observe changes as well as sensations eg. are your feet cold or hot to the touch, inflamed, etc.  If your family doctor is dismissive go to a good chiropractor or osteopath for advivce.  You don't have to let them manipulate you but they are very clued up on spinal and neurological symptoms.  Do you have other symptoms?  Maybe try the timeline approach, loads of us here can help with that.

I never really kept a list of my symptoms, and now when I am getting complex questions from specialists I just can't remember when that symptom started or if this sign was there etc.  Am becoming really annoying as a patient (for many reasons), as I have the consultation, the doctor works on the information they get, then some days later I phone with something really really relevant which I forgot to mention.  Now am doing the good girl thing and putting a timeline together of sorts.  Have a lupus referral pending and they're not going to give me the time of day if I just keep drawing blanks when I'm asked stuff, so am going to write out a list of all as I keep remembering it and will have answers ready to hand.

Keep an open mind.  MS is as others said here is a complex diagnosis, and to be wrongly diagnosed with it can cause as much harm as not being diagnosed when you have it.  The secret is in getting open minded doctors, anyone who is phased by you questioning them or won't consider anything other than what they know is not worth your time.  Don't get too drawn into looking into one condition or another, look at what is going on with YOU.  You may have a condition not common or more than one thing going on or yes you may have MS, but second guessing is a dangerous game, as much when the doctors do it as with their patients.  I trained most of my life in science, and am comfortable with the unknown until it is established to reasonable proof.  Some doctors resort to what are effectively educated guesses.  With such a complex system as the body it's the best they can do unless they are really really good or very motivated.  

Hope something here is helping.  Basically I'm saying to sort out your symptoms and signs, try to establish patterns maybe if there are any, and then be prepared to take these to a good physician, if you are lucky enough to find one - not with a diagnosis, but with information they can work with.  I don't know if you've already done this but maybe fill us our here with a bit more about yourself and someone may have ideas where to go next.  Many here have been on the 'limbo' trail for years, anything that can shorten that route,  go for it.   May post me own in bit but thought I could contribute.
Good luck
wish

[OperaMBA]

I, like MomZ, I am undiagnosed and have been at this for 7 years, with most of the MS symptoms.  

I do have one lesion on my spine, but it supposedly is an oldy.

I had total paralysis of my arms and legs in my first episode, which was probably Transverse Myelitis.

Anyway, good luck to you on your quest for an answer to you medical situations.

I come here for the same reasons as MomZ.   No one outside this forum understands, and they all treat me like I am faking or crazy.   My coworkers have stopped talking with me altogether.

Thus, coming here helps a great deal.

Richard
OperaMBA

[Momzilla]

This IS very, very frustrating,  I'm sorry.  I've been dancing the Limbo for quite a long time, myself.  And I've had two episodes (documented in the hospital) of severe weakness in my legs to the point of not being able to walk.  I have hyper reflexes, lots of signs and symptoms, but NORMAL testing.  Not ONE lesion on MRI.

I feel your frustration.  I do.  

That's why I come to this place.  This forum.  Because my family, my friends, my husband do not understand what I am going through.  They don't understand that my pursuing a diagnosis does NOT mean I WANT to be sick.  It means I want to know what's wrong, and I want treatment.  I want peace of mind, finally.  People HERE understand that.

I don't know if you have MS.  MS is one of the trickiest diagnoses to make.  This I know.  Especially without lesions on an MRI.  How I know this!  I know I'm in for a long run of brick walls because I've run into them time and again, and have watched my dear friends here butt up against them, time and again.

But once in a while, someone pushes through.  And we celebrate and grieve.  We are here for each other.  We are here for you.  I wish we had a magic answer for you, and could mail it to your doctor.  It's not here.  Does it sound like MS to me?  It sure sounds possible.  So, I'm going to cheer you on and be here for you.

I wrote a Health Page that is a 'work in progress' that I don't know will ever be complete called "Limbo -- How Low Can You Go?"  Read it.  It may help to know that many of us feel the way you do.  We're all struggling here together.

Let us know how else we can help you.

Big hug,

Zilla*