No Diagnoses; No explanation of probelms

[DazedandConfusedGuy]

Hello Everyone,

I am new to the forums.  I happened to find this site during a search on this specific topic.
I have been battling with MS symptoms for several years and they are gradually getting worse over time. I have been through more MRI's than I can count. My Neurologist says, "there are no lesions, so you don't have MS". My primary physician, ophthalmologist and rheumatologist all seem to think the symptoms point to MS because testing for other possible causes have come back negative and the chronic nature and many symptoms that  continue to gradually worsen, point to this disease. My primary wants me to see another MS specialist, which is what I am planning to do, but I find it difficult to question a physician that specializes in this disease and find myself in limbo and am starting to wonder what is going on.  

Getting to the bottom of the diagnoses is only part of the problem. Explaining to colleagues and friends you have times when you are exhausted beyond belief, have eye sight issues, have trouble with memory and many other issues - without a medical explanation - is truly wearing me down.    

Sorry for the vent.  I am just at a loss and would like to know if anyone else has faced this dilemma with the diagnoses and dealing with the side affects when you have no "medical identification" to back your conditions.

Thank you all for sharing your posts on here.  This is a great find for me.

-Greg

[Lulu54]

We have kicked around the health page on Differential Diagnosis for some time here - I have posted our working copy here for your review...

http://www.medhelp.org/health_pages/Multiple-Sclerosis/What-Neurologists-Must-Consider/show/1219?cid=36

This might help you to understand how difficult it really can be for the neurologist to determine the cause of our problems.

I hope this is helpful.

Lulu

[mistylee]

Hi there..another limbolander here.....going on 6 years.  

Addi I also just tell people its MS now. So much easier.. Anyway I have about 12 lesions on my brain, hyperreflexis and clonus and spasticity in both quads and right calf.

To my way of thinking , what else can it be???  The neuro is not looking for anything else he is just waiting for more evidence.  And what else could be causing spasticity which has been dx by two neuro physios.

So I deffinately know and hear your frustration Dazed.  

Mistylee

[Sidesteps]

Hi there! I am another in Limbo-Land. Welcome to the forum.

My MRI was clean as well but there's been abnormalities noted. This IS a difficult place to be. I try to take advantage of the days I feel good and can ignore the reality that symptoms will likely come back soon. Denial? Sure! I do try to always remain assertive while trying to fight the frustrations in being discouraged some days.

I haven't read anything about this but I know Jens might have. I wonder if there is a test for axonal damage in our brains? I know there is the OCT which checks for atrophy. I will be asking about that at my next appointment.

I hope you find understanding and knowledge here as I did.  

[Lulu54]

hi Greg, this can be such a complex issue to deal with.  It is a diagnosis by exclusion and you want to be sure that you are being treated for the correct disease.  some of us get lucky (I know, I did!) and have a dx almost immediately and others linger in limbo for years.

I'm sorry your symptoms aren't speaking clear enough for the doctor to hear them .  do find a second opinion neurologist- preferable an MS specialist - and have another look.  Your first should not be offerended since he is unable to come up with an answer.

best, Lulu

[addicted2harleys]

Lol, Cheesy!  Getting the hubby to read is definitely a great feat in itself!   I can so picture that.  :)

I can understand what you are saying as far as jinxing yourself.  I went through that, myself.  I think I threw out the thought/feeling of superstition because of the length of time I have had to go through for my dx.  It got to the point that I really needed a better way of describing what is wrong with me.  Just saying I have MS became a good answer for me.  It may not be the best choice for others though.  I guess people just need to weigh things out for themselves.  For me, saying I have MS....or what I usually say is "I have symptoms of MS but I don't have lesions on my MRI's" is also something I say to people that show an interest in understanding what is happening with me.  

I hope you get answers soon, no matter what the dx happens to be.  Being in limbo, no matter how long, really bites.  :(

Hugs,
Addi

[cheesymum]

Hey!  Add me to the list of "Limboland" dwellers.  I, too, found this great bunch of people just a while ago because I went "googling" and stumbled into here.  I'm very glad I did.  I don't want to sound presumptuous since I'm so new myself but welcome!

Addi, I can so understand saying it's MS without having a concrete dx.  I've been tempted to do the same thing myself.  Only the superstitious part of me won't allow it.  That little voice whispering "what if it isn't and you jinx yourself into it?"  I know in reality that can't happen but...

And, I agree, the health pages are a great source of info.  I think I've read them all twice.  I've even gotten hubby to sit and read a couple of them (a feat in and of itself as he is just not a reader!)

[DazedandConfusedGuy]

Thanks Addi.   I am amazed at the amount of people facing this issue.  This is very helpful knowing I am far from the only one feeling frustrated as we try to get answers.

I know exactly why you choose to just tell people you have MS.  It gets to a point where you have to come up with something.  Otherwise people come up with their own ideas.  My biggest struggle is with work.  For the most part, I am up beat and look fine, but when I get a flare up, I cannot help it, I look run down and out of it.  I can mask the balance and the get through the site issues, but my appearance is something I have yet to find a way to mask.  

Thank for your kind words.  

-Greg

[addicted2harleys]

Hi, Greg-

Sorry I am a little late in welcoming you to our forum.  I think you stumbling upon us will be very beneficial for you, as it has for me and many others.  I, too, am in limbo at this time.  My journey is six years long.  I have experienced similar things to you.

This may not be the right thing to do, but nonetheless, I do it.  I found it extremely hard to explain what is wrong with me, as you have expressed.  For many years I had to go through long explanations to family, friends and strangers.  It got old real quick.  I started just saying I have MS.  While I do not have that dx, it is so much easier to use this explanation instead of the other way.  Granted, most of my family and friends know the reality of the situation, but for those who don't and ask me (mostly strangers and acquaintances), I just label it MS.  

I don't do this because I want it to be MS.  Who knows, I may truly not have it.  I have the symptoms of MS...just no lesions.  Yet, my symptoms are also symptoms of other diseases/disorders, too.  So, for the ease of an explanation until I get an accurate dx, I find just saying it is MS makes things easier.

Anyway, I want to also direct you to our Health Pages.  You can find the link up in the right hand corner.  There is a wealth of information there...written by a few members with MS, including our very own retired pediatrician, Quix.  She is on leave from the forum at this time, but will return when she is ready.  

I am sorry you are experiencing what you are, but feel you landed in the right spot for understanding and compassion.  I look forward to getting to know you better.  :)

Hugs,
Addi

[DazedandConfusedGuy]

Thank you all for your kind comments and also for sharing your situations.  Knowing so many others are going through this difficult period of identifying the problem so we can properly address it is truly a relief to me. The physical attacks are bad, but trying to explain you have a problem, but t has no name is just as frustrating.

Although I have some really rough days, I am an optimist and I do my best to keep a positive attitude. I have a great life and understand we all have challenges we must overcome. I just wish this damn disease would either go away or get identified so I know how to cope with it and move on.

Thanks again everyone.

-Greg

[twist330]

Welcome to the Daz, and welcome to my world.

I have have had symptoms for 20 months. The neuro did all the tests, apart from one lesion on the MRI and brisk reflexes everything is normal.

I have seen a neuro psychologist who said it was not a psychological issue and the neuro need to sort it out.

I have seen a neuro physio who said this is central nervous system problem due to reflex reactions in my right foot and the neuro needs to sort it out.

I have seen an eye specialist who has confirmed I have atypical blespharospasm in my right eye which is due to a disturbance in the brainstem.

I have had one doctor suggest it might be RSD which the neuro dissmissed as did the neuro rehabilitation team, who also felt it was CNS.

My last visit with the neuro was in January and he basically said he done all the tests there was no point in repeating them that was all he could do so he was signing me off. I asked for another MRI which he obliged to, to put my mind at ease. It has come out the same as the first. He has taken no notice of what the other specialist have reported to him, So I'm signed off.

Thankfully the Dr that thinks it maybe RSD is treating me with drugs. Pregabilin and Cymbalta. He is fairly open mindedand a really good listener. I have another appointment with the neuro rehab team in June and I am going to point all of this out to them.

But I too find it hard with no Dx. As you say trying to explain to friends, family, work collegues is a nightmare. Holiday insurance and the like. But also there is no support as there is no Dx. no one to tell you how you can help yourself, how far to push, what you may be entitled to. Can you class yourself as disabled?

I have no answers, I feel at a loss.

Twist

[MissLauraI]

I am 52 and the best I can figure have had MS symptoms at least since I was 26 (maybe since I was 16). It was never suggested that things I experienced were MS. I just thought I was a really weird person all my life as far as my body was concerned.

When my whole right side went weak at 26 and I spent a month in a wheel chair unable to walk, the doctor at the time chalked it up to being a "hysterical woman". And I said to him, "you'd be hysterical too if your whole right side went weak, and your short term memory went to mush." recouped from it 1--% until 2 years ago when my right leg went weak and never recouped.

I am now getting progressively worse with new symptoms and back at the dx thing...waiting in limboland. Only 2 small lesions on my MRI so not very significant Iv'e ben told.

I completely understand your frustration and need for answers!!!!

I too stumbled on this site while googling for answers. I am so happy to have found it and all the wonderful, knowledgeable, supportive people here.

I hope you find your answers soon!

[COBOB]

Welcome to the forum and all I can say is that I was diagnosed at 48 (6 months ago next week.)  My first neuro said I had one lesion and he didn't think it was MS.  I had an abnormal VEP and he really didn't seem interested so I transferred my care to the University of Colorado Dept of Neurosciences.  

It happens to also be one of the clinics for the Rocky Mountain MS Center.  They suggested watch and wait for 6 months.  3 moths later, Trigeminal Neuralgia.  3 moths after that MRI 32 and more lesions.  They diagnosed RRMS.  3 months later, Optic Neuritis again.  I have my 6 month follow up Wed and my third MRI a week after that.

If your neuro says it is not MS, then the question becomes "What is it?"  If it is neurological, his job is to figure that out.  Since your PCP, Rhematologist, etc all think it is neurological, GAME ON!   Sorry, if he is not up to the task or interested move on to a doctor that is.  Not nice, but they don't have to live with whatever it is, you do.

I think you should see the MS specialist.  Let us know what they say.

Bob

[LisaJF]

Again welcome to the wonderful world of Medhelp forums! You will find the most compassionate, understanding and intelligent people here!

I am sorry for your experiences that has been dragging you through years and years without an explanation.  You had tests diagnostic and laboratory up the whazoo.  You've had it.  I can understand.  I would be at my wits end if it was "years" to experience what you have experienced.  I know there are quite a few people who have went decades!!! DECADES! with symptoms.

I can understand in regard to explaining yourself to people who don't seem to understand what is going on with you, instead  you get that icky feeling down inside they are wondering if you're a hypochondriac.  You're not.  

I too, would encourage you to see another MS Specialist.  This is YOUR LIFE not theirs.  This is affecting you not them.  They get paid as you come into the office and sit there for however long during your visit.  It is their DUTY to listen, to be empathetic, to be knowledgeable, to be proactive, to be COMPETENT!  

I feel for you, I really do.  But you know what? You came to a great place! I'm glad you found us!!!!! wooo hooo!!!!

Lisa

PS - Let us know what you're going to do!

[sarahw244]

I can relate also.  I have been having "issues" for about 3 years now.  The hardest part for me is feeling like c r a p but appearing "normal".  I do have outward symptoms which others can see, but most of them are only noticeable to myself or to people who I am around all the time, like my family.

Hang in there.  This is a great place!  There are a lot of wonderful people on here to offer support, give adivce, or just listen when you need to vent.

All the best--Sarah

[MonkeyMom4]

I (unfortunately) can relate to almost everything you just said.

My neuro hasn't completely ruled out MS, I too have a negative MRI, but he knows something is going on.

I have the same family members/coworkers saying the same thing. It's exhausting and it would be nice to say, I have this (fill in the blank) medical problem and this is why it's hard to do certain things.

I feel your frustrations. Don't give up the fight, an answer will come someday.

I wish you all the best and hope your answers come sooner than later.

-Kelly