Stay open to the possiblities....

There are so many people that remain in the land of limbo.  No diagnosis, all kinds of different symptoms.  No one understands more than I do, what it's like to not have a diagnosis of "something."  Most of you already know my story, so I hesitate to repeat it here.  But will give the "newbies" a very quick review.  My first Neuro gave me a diagnosis of MS after the very first MRI.  7 lesions in the brain, one in the spinal cord and a host of detectable problems on my neurological exam.  The Neuro was less than caring for his patients, so I went on to another Neuro.  Despite my "evidence and diagnosis of MS," he took the diagnosis of MS away.  I remained in limbo for three years, before finally heading to a teaching hospital in Virginia.  I then was definitively given a diagnosis of MS. Five years passed with no treatment for the MS.  .

The reason for my post is simple.  I know how horrible it is to have all these difficulties with your body and not have a diagnosis.  It's horrific, not to mention, stressful.

I would just like to say that you have to remain open to the possibility that your symptoms can be caused by so many disorders.  So many of the neurological symptoms associated with MS, are also the symptoms of so many others problems.  MS is not a clear-cut disease with a simple diagnosis.  There are literally dozens of tests that have to be completed to rule "out" some of those 'other' diseases.  Among that testing, there has to be time.  Time to see if your problems relapse and remit or remain constant.  This is very important information to a Neurologist, when he is trying to diagnose you.

We put so much stress on ourselves, when we say, "I just know it's MS.  I am sure of it.  My symptoms fit perfectly."  Sure, it certainly can be MS, but can also be a dozen other neurological problems.  Just keep your mind open to the 'other' possibilities.  Nothing would be worse than to push for a diagnosis of MS, be treated as if you had MS, then really have another problem other than MS.  Consequently, not being treated for that "other" disease.  

Patience is key, when you are in limbo land.  Are there some really 'arsehole' Neurologists out there?  You bet there is.  If you aren't getting any answers from your current doctor, than I highly suggest finding another one.  Someone who will listen, but also someone that is not quick to jump to a diagnosis of MS.  I shudder when I think of how many people may be walking around with a diagnosis of MS, when they actually have some other neurological problem, that is receiving no treatment at all.

During those times of uncertainity, remain open to the possibilities that it is something other than MS.  I really do care about each and every member on this forum.  I also care enough to want you treated for the correct disorder.  More harm can be done to get a quick diagnosis of MS and really not have MS at all.  I hope all of you can understand what I mean, but posting this thread.  It's because I DO care, that I voice my opinion.

Best Wishes, Heather  

[Nanners123]

Interesting that you should post this today. I woke this morning thinking of all I have been through and all the different symptoms. I have an appointment Tuesday to go over the latest MRI's. I am mentally preparing myself to be open to all possiblilities. I think my testing thus far is leading away from a diagnosis of MS, but I know something is not normal. I have posted in the past my various symptoms as well, so will not go into it all. But when I can't get a comfortable night sleep due to various parts of my body deciding to go numb or tingle and wake in the day and can't wipe counters, walk stairs or do my hair due to burning and painful muscles, when minor twitches in all different parts of my body worry me, I say can this all be some sort of normal?????

No doctor to this point has been concerned, by that I mean I am not dieing. Current neuro whom I am praying will be comprehensive in his search with me has already said, "you have nothing big, bad or ugly going on". I am beginning to become open to the idea that all of these idiosyncratic symptoms are all my version of normal OR forget about them because they are not killing you.

All of this is frustrating and I think the part of me that is a perfectionist is causing this frustration. It is very hard to sit back and say everything was fine years ago and now I have these little bothers going on all over my body but no worries, you don't have a tumor, cancer, MS or some other serious possibly deadly disorder!!!  I am resoving myself, however, to this possibility and do try to live my life with positve vision and forward thinking!! Thanks for the post, it help to validate what was already going on in my mind. I hope it can help others as well. Have a great day all.

N

[jono1970]

Thanks for your words of wisdom. I understand completely and appreciate the time taken to write to us 'newbies'

kind regards,

John

[BondyinOz]

Hey there.

I am definitely open to any and all possibilities. Naturally I would prefer whatever is going on to be treatable, but I'll deal with it if that's not the case. I sought counsel on the MS forum not because I'm 100% sure that I have MS, but because some of the symptoms I have do present in MS patients, so the people who are here can relate to what I'm going through and that makes me feel a lot better.

I have spent a long time in limboland so I'm used to the waiting. I suppose I am just young and impatient, annoyed that I can't really begin my life at the moment because I'm not well enough. I keep stopping and starting, having to retrace my steps and start again with each little set back. Now that I'm finally in what I believe will be my career for the forseeable future I want to make a name for myself, do the best I can and release myself onto the world :-)   (Watch out, here I come!)

I know that being unwell is horrible for people at any age, and I shouldn't be complaining more than others 'woe is me' style, but I have already grieved for a life that has been denied to me when I had CFS in a serious way. It took a lot from me and I dealt with it, but I feel like I've done my time and now I should be getting on with things, not getting sick again with yet another 'unknown' problem.

Anyway, I will keep my mind open and my head up as much as I can. I appreciate your post and thank you for your kind words as always :-)

Mel

[Heartshome]

Very well said. I struggle with this as well. Here's what I've heard from my doctors:  First" it's probably MS. Then perhaps Lupus, then I"m told that it's none of the dreadful diseases, so don't worry about it. Then, it's probably MS again. Then, it's not MS because my MRIs are clear, but something neurological is obviously going on. But...it's progressing very slowly, so that's a good thing and don't be in a hurry for a diagnosis. "

I know that I should just let go and get on with life as best as I can. Thank God that I am better off than most. It's been approx. 8 years and I still am able to get around just fine (except for the days that I have to hold on to walls and go up stairs holding on due to dizzyness.) I read a great quote last week that went something like this..."If you have an undiagnosable illness, you'll either get better, die, or live a long time feeling miserable. There's nothing that can be done, so stop worrying about it and get on with the life you have." Well, I'm trying to take that advice.

I don't have a brain tumor, I don't have ALS, I don't have lots of other letter diseases (CIPD, etc.) and they can't diagnose MS, so for now I eat a super healthy diet, get tons of rest, reduce my stress levels, and exercise as best I can. I have got to let this go and stop thinking about it.

Thanks.

[AussyRose]

Not only am I open to other possibilities, but I am actually HOPING it is something else...

...like, "hey, you have blah blah in your back, go to a chiropractor."  

That wouldn't explain the optic neuritis, but hey, some people just get it.  I really think I have a neck problem and that's it.  I just was told they were doing an eval for MS by neuro, so I wanted to find out more about MS.  Now I really hope that's not it!

...but I still need answers!

[mokibear]

My biggest problem with the not knowing is not having any tests done to rule anything out. I'm left with probably not MS but can't say for sure. The only tests done were the MRI without contrast and a leg nerve test. This was at a MS clinic. When I asked about ruling other stuff out all I got from him was that they don't do that. They only deal with MS itself. The problem was that the first neurologist who did the in-office testing and history suspected MS although she said there were also mimics that should be looked at. When ego maniac head neuro came in, he blew at her for saying anything at all to me about her suspicions and that he was the one who would decide. After that it was down hill for me. The first neurologist is no longer there. I am now trying to find a new neuro.

I would be quite happy to have my old life back. I don't want to have anything wrong with me but I know that there is. The question is what? I'm frustrated at not knowing what I am fighting. Is it MS, I don't know. Do I want MS, does anyone? The ones suffering from it I'm sure don't want it. I just want to know what is wrong so that if there is treatment to help me then great, if not then I'll have to deal with that. But when you don't know at all and won't be helped due to ego problems that is sad indeed.

If this was just a nuisance problem then it would be not so bad, but its not. It's affecting my ability to work and live a normal life. I'm not a chronic complainer, and usually the last place you will find me when I'm sick is at the doctor's office. But this has me worried. I know in my heart something is not right and it is slowly getting worse. I try to exercise patience but it's not exactly my strong suit. The reason for me on this forum was to try to get information both on MS and other mimics. Not only did I find that but I also found a wonderful support system.

I thank all for their comments, advice and support. For those of us undiagnosed, yes we need to be strong and patient but when things get us down, it is nice to know we can come on here and let loose and ask questions. To those of you diagnosed, your advice and strength and comfort  that you show in spite of your disease is inspiring.

My thoughts and prayers are with you all

Moki

[Heather3418]

I have to stop being someone with MS and be a mother here....I wish that I could hold each and every one of you, that have not received a diagnosis of "something" and are still going through limbo land.  My heart just breaks for all of you.  I really mean that from the bottom of my heart.

When I was going through my limbo, I was hoping that my first Neurologist had it all wrong.  The second Neuro I went to, was highly regarded as the best in his field, where I lived.  So when he "took away" my diagnosis; while I did go through some shock, I thought, "Oh yeah, I just knew it coulldn't be MS.  I am finally going to be treated with something that only requires a little pill everyday."  I started to think of myself as lucky, cause this doctor said it wasn't MS.  Then I started to get mad.  This doctor wasn't trying to "find out" what was wrong with me.  He wanted to retreat me for my previous carpal tunnel syndrome, by doing NCS and EMG's.  He thought I needed another operation.  I would go to him about all of the symptoms I was having all over my body.  The heaviness in my legs, the spasms, the "water" running down my legs, the tingling and numbness going back and forth through my scalp on my left side.  I told him that I was having trouble with my speech.  Sometimes the words didnt' come out right.  Or I couldn't find the words at all.  The balance problems, the fatigue, the intolerance to heat, how my symptoms got worse when I was fighting on infection.

He explained away the lesions in my brain.  He said they were from past migraines.  He said the lesion in my spine was a "flow void."  An "artifact."  In other words, it was not a lesion at all.  I begged for something to help with my spasms...he presribed a drug for Parkinson's disease.  He would not prescribe anything for pain.  I went back and forth with this for three years.  I was pulling my hair out.  My family said that I was "melodramatic, my ex would even to tell me to "shut up and stop complaining."  "I didn't have MS, so I should stop my comlaining."

I was so depressed.  I was in so much pain.  No one would listen.  No one would help me.  My depression started to deepen.  I began not to care.  I stayed in bed all day, I didn't want to eat, I began to hate myself.  I was ashamed to go anywhere.  I was accused of being a hypochrondriac.  After all, one of the top Neurologists in the state was saying that it was not MS. (By the way, he is now on a "bad doctor" list on the Internet and his practice is almost non-existent)

I truthfully, didn't care whether I lived or died.  No one believed me anymore.  I suffered alone.  Then a miracle, I dropped into an MS forum on the Internet; told my story and was advised to "find another doctor and fast."  How was I going to do this?  I had to have a referral to get in to see a specialist.  I finally made an appointment with my family doctor and we sat there for an hour, discussing what was happening to me.  He finally found me a Neurologist in Charlottesville, VA., at UVA Medical Center.  I had my appointment.

Then came the battery of tests.  All of them, all over again. By this time, I was in a hell of a relapse.  The MRI's showed active lesions, not 7 of them anymore, but more, now in many places in my brain and that spinal lesion?  It lite up like a Christmas tree.  A spinal tap was immediately ordered.  Positive for oligliconal bands. (sp)  I was back in the Neuro's office within one week.  I was told there, that they wanted to start me on Avonex immediately. "The "MS" had gone untreated long enough."  The doctor's at UVA filled a complaint with the medical board about my previous Neuro and believe me, they got action.

I was given medication to help control my spasms, my pain, my agony.  My family and friends seemed to keep the phone ringing with their apologies for doubting me.  My mood lifted, despite having a diagnosis of MS...again!

I've been there and done that.  That's the reason for this post.  I DO understand where 'limbo land" exists.  I wish for each and every one of you, going through that limbo, to be lucky enough to find that one doctor who will not stop until they find out what is wrong.  I want resolution for each and every one of you, no matter what medical problem is finally discovered....  My heart aches for you...

I'm with you.  I understand.  I only want what is best for all of you.  As a mother, I again say, I wish I could hug each and every one of you that is going through this uncertainity.  It's awful.  I've lived it with you..

Best Wishes, Heather

[BondyinOz]

Oh how my eyes welled up with tears reading your post. Such heartbreak and agony you have felt. At least my family supported me after only a short time of not believing me and this year they've been behind me probably 95% of the time.

Thank you for your hugs - please accept mine in return.

Mel :-)

[Heather3418]

I accept that hug...gosh it's great to have friends...they are priceless!  Angels with Invisiable Wings.  That's what all of you are to me....

[BondyinOz]

Aww shucks, you are really going to make me cry :-)

[Momzilla]

Heather, that was an excellent post.  Two excellent posts!  I have been thinking for a long while there has to be some way to gently say what you have said, and you said it beautifully.  We ALL have to be open to the possibilities of other conditions, diseases besides MS while searching for a diagonsis, newbies or "oldies!"  I'm with Nancy -- I am sort of coming to terms with my doc's suggestion that CFS may be my ultimate diagnosis.  This would be a hard pill to swallow for me, because there is no treatment, and becasue it's really socially unacceptable, if you know what I mean.  It sounds so foolish, because it certainly would be better than a degenerative illness like MS.  I don't mean to diminish what so many of you go through with that.  You all inspire me so!

It needs to be said, though, that one CAN'T ignore lesions on an MRI and signs of illness like loss of function.  If this is happening to you and your neurologist is giving you the "lesions are signs of aging" routine, find another neuro IMMEDIATELY, before you lose any more function!  Sometimes neuros are just twits.  We know this.  There's an old joke, somewhere is the world's worst doctor.  And someone's got an appointment with him tomorrow!  Think about it.  It's true...We still must advocate for ourselves, but remember that not every tingle is MS.  It's a fine line....

Anyway.  Well said, and point taken, Heather.  Sorry you had such a difficult time with your diagnosis, undiagnosis, too.  What a story!  Take care!

Zilla*

[6-paq]

Very well said and I thank you for this thread.

I feel like I was thrown into this mess this year, having thought that my issues were ones that were easily curable.  I've vaguely heard of MS, but never, ever suspected it.

Now, I'm faced with a "possible MS" Dx and am waiting for the MS to rear it's ugly head.   Meanwhile, I have not given up looking for other causes of my symptoms and have found a few health problems that I am in the process of dealing with.

I am greatly in denial.  I keep wanting to find other reasons for why I feel like I do and for the things I experience daily.  Some fit the MS diagnosis, others do not.

However, as much as I want to ignore the 2 brain lesions, I can't and neither can my neuro.  He's stopped looking for mimics at this point, and since all other testing has been "normal", he's waiting for more debilitating symptoms.  

I do sometimes wonder if those lesions are from something else.  Something that is either worse or more curable than MS.    Yes, I can go seek a second opinion on the "possible MS", but since I am in that denial, I'm afraid that another neuro will change the "possible" to "definite".

I'm so, sorry for all of you that have been through the wringer.  ((HUGS))  I realize that my journey thus far has been minor compared to many of you.

Take care!  Pat :)

[BondyinOz]

Zilla,

Please do not fear a DX of CFS. I was diagnosed in 2003 after being ill for about a year. Yes it was a very difficult time for me as it was such an unknown quantity for those who knew little about it, but eventually I gained support from people around me. I also got in touch with people in my local district who had it too and we formed a bit of a support network.

Thankfully I seemed to shake it in late 2004 but suffered from relapses since then. I think I started getting over it due to my age - I was 19 when symptoms started in earnest and 21 when I got back to full time work. I am now in a full blown episode, as you know, but the unfortunate thing is that it is not CFS - I have already seen my specialist and he has ruled this out. He said that he was unhappy that I had had to return as he thought he'd gotten rid of me (heehee) but that I need to seek further help from a Neuro and an ENT (due to Sinusitis and balance problems).

So at least for me I have ruled something out and all signs point to something neurological. If you ever have any questions about the CFS please let me know.

Mel

[Heather3418]

Could you tell me alittle more about Chronic Fatigue Syndrome?  I have often wondered if I may indeed have a few problems going on...not just MS & Fibromyalgia, but believe it may extend to CFS.  Of course, I certainly hope not, have enough on my plate.  But I am "open to the possibilities."

Also, do you happen to know how many people that have been diagnosed with MS, also have CFS?  If you know....?  Some many symptoms overlap.  It's confusing for me.

Thanks all, Heather  

[moeck]

This is one of the most important posts I have ever read concerning finding the answers to any disease or disorder.  You also have to stay open to all the possibilities.  I too was diagnosed with CTS in both hands.  Although my neurosurgeon and I agreed it wasn't causing all of my symptoms, he pointed out that as long as I was not working because of my other symptoms I should have the surgies done now and eliminate the pain the CTS was causing and take those symptoms out of the diagnosis equation.  It just happened that the surgeries were three weeks apart and the neuro at JHHS gave me my diagnosis in the period between them,  He also agreed with getting the CTS "out of the way" to prevent any further hand symptoms from being blamed on it.
He dismissed my brain mri as "nothing to worry about" but did say he would do further ones at intervals just to be sure.  He also gave me a diagnosis, CSM, that fits my symptoms and timeline perfectly.
So, hang in there, fix what you can and never forget that you can have more than one problem at a time.  Anyone with CFS has my full sympathy.  I have enough to do dealing with pain and physical limitations but at least I can be active for six to eight hours before crashing.  I can only  imagine what you must be going through.
moeck

[Momzilla]

I'm off to work, and am just learning myself.  The best place to learn is the Center for Disease Control website.  Google "CDC CFS"  I'll try to send a link later, must go now.  Not computer-savvy!  Also, I think although the symptoms are very similar, and the viral causes could be the same in some cases (HHV-6) for some patients, I think it would be unlikely for someone to have both illnesses, but I could be way off base.  

Have a great day!

Zilla*

[uk2]

zilla

a dx of CFS or M.E as we call it in the uk is not to be taken lighly and if you visit the forum for it on here curls has some fantastic research about it and has been a great support to me as i have always kept my option open specially since the MRI came back clear and was reluctant to have the other tests iv just had but they have to rule all other things out, im learning towards fibro and really want to get to see a rheumy but my doc is sure its something neuro based and is learning towards MS but fibro is in a away and CFS  linkned to the CNS and causes neuro issues some people are bed ridden with it, infact my friend who has MS had it tens years apart from two attacks is so healthy more then me i can barly walk without a stick and have to go in a wheelchair if i go on long trips and this girl jogs most days yet has a disabled badge, MS,FM,CFS are not a death sentance but they are cruel illnesses for some its a awfull painfull, back breaking illness for others it seems to touch lighly in all of the named conditions.
If i was working still, going out, being the leader still in sunday school at church i would not mind what this was if i was not in constant pain, if i did not let people down all the time because of being ill i would not care, but i grieve for my losted life im honest, i want my old life back, but thats my will not gods.
If i knew what i was fighting i would reasearch it, do the best i could to make things more comfortable for myself which i am trying to do anyway but i could face it front on and that would help so much, i could scream with the frustration of this all, oh how quickly your lifes turns around. ill look at that site.

Heather

wonderfull posting, and you have been through so much what a wonderfull strong person you are, you knew all along what you had and noone believed you not even docotors, how awfull, im glad you have some peace now and some treatment and im glad that consultant is paying for his mistakes i pray no-one else gets caught up with him, im sorry for the losted years of frustration and pain.

take care samantha x

[Heather3418]

Thank you for your kind words.

May I say something about the "handicapped placard," as we call them in the United States?  I also do not use a wheelchair...I do not use a cane to walk, I do not "look" like I have anything wrong with me....you see...I have "Invisible MS."  And "I" have a handicapped placard.  You may ask why.  Why Heather if you do not use a wheelchair, if you walked unaided without a cane?

You see, I may have "Invisible MS," but I park in a handicapped area.  Why?  Because, with my course of MS, I can walk briskly INTO the store...I am full of energy and ready to do my shopping, but you see...several minutes into my shopping experience, my legs begin to feel like they are in quick sand.  My legs become heavier with each step that I take.  Suddenly I am tired.  I just want to go home.  I am only half way through my shopping list...I have yet to get the bread, the milk, the washing powder...and I say, "How will I ever make it?"  I muster all the strength I can, to finish my shopping.  People besides myself, are counting on me to bring home something for supper or that milk....something they need so they can have their favorite bowl of cereal in the morning.  I struggle through.  I complete my list.  Then I stand in line for what seems like an hour, waiting to be checked out by the cashier.  I grow more tired by the minute.

I start out of the store.  I smile when I see that my car is only a few feet away.  Thank God, I don't have much further to walk.  Thank God for that handicapped placard.

That's why "I" am so grateful for that special....'handicapped placard.'  Something no would else would even know that I needed, when they saw me ENTER the store....

This is my story, but could be, the story of so many with MS.  Our disabilitiy is not always there, for everyone to see.

Hugs, Heather

[uk2]

I am truely sorry for my comments and i would never want to upset you are make you feel bad im just frustrated that i cant get help for the things i need im trapped in my house as i cant walk far i use a cane i use a wheelchair but because i dont fit into any bodys boxes at the moment i cant get help!!

The friend who has MS jogs three miles a day she goes to collage she has three boys she is out everynight running football club with them she goes out most weekends to late and has not had a relapse in five years!! which is great and we laugh together how she is so fit and i am not and that she has a badge and i dont but she also agrees untill i fit in a box i wont get help its how it seems to work over here and im sure all those years of fighting to know what is wrong with you you will realise that.

I know what it is like to have a illness that does not show on the outside one day ill be ok enough to pick the kids up another day i can barly get out of bed and people dont understand this they look at you and you look fine but inside your not.

Lots of love sam x

[BondyinOz]

I hope that I did not sound glib about a DX of CFS - I did not mean to sound that way. It is a massive thing to happen to you and will change your life enormously. I should know; I've had it.

I had one thing on my side; my age. I was only 19 when symptoms first presented and 20 at DX. Whatever happened to get me well enough to leave my parents house again after 6 months of chronic illness and heartache I will never know. At this point I am wondering if it was even CFS at all, but maybe I'll never know. I apparently don't have it now - according to my CFS Doc - so I just have to wonder exactly how related this current illness is to that one.

For those of you who have CFS I give you my full sympathy and support. I do have some info on it and will post it up soon - I'm working a full day of classes tomorrow at school and had a meeting til 7pm tonight so am beyond the point at which I could do it now. Hoping for tomorrow night or Thursday, my day off.

Mel

[Heather3418]

Oh honey...you don't have a thing to apologize for.  I was not upset at all.  Trust me on this one.  I wrote what I did, to help those people who do not understand; what it's like to have "Invisible MS."  

I totally understand how bad you have it, just trying to make it through the day, Samantha.  God love you for determination and strength.  I happen to think you are remarkable.

No one hopes more than I do, that you will soon fit "in some box," no matter what the diagnosis, so you can start to get the help you need.

God love all of you...this forum is for discussion and learning, that's exactly what we are doing.  I learn more from all of you, everyday.  You are a true blessing...all of you.

Heather    

[Quixotic1]

I just sit and read this thread in amazement.  Heather, you're spoken your truth beautifully and everyone is the richer for it!  Thank you so much.  This is truly an "Important" thread like a few of the others we keep bumped up.  I am so touched and there is nothing I could possibly add.

Quix

[Heather3418]

I was asked by another poster to bring this post to the top...Here tis!

[Momzilla]

Yes, this is one of our gems...

Zilla*

[essdipity]

Bump for newbie

[cjacks]

Thanks for all your words and wisdom. I'm out here by my self trying to learn and absorb everything I can... its all very ,very difficult

[nette573]

I found this and read it and it is very helpful.  I will bump back to the top.

[doni54]

bump......

[tdr1013]

these are great posts, am so scared right now, this all started about 2 yrs ago after it went away and then saw neuro passed exam reflexes,gait,babinskis,and several other things put it to rest moved on with no problems or symptoms at all, until got a bad head/chest cold just about 2 yrs after initial symptoms as head/chest cold symptoms subsided began feeling light nausea, imbalance,blurred vision on things close up only, but no eye pain, muscle spasms all over, mild pins and needles, all of these I had 2 yrs ago except nausea, also thi time pain when swallowing feels like a bruised adam apple after about 2 weeks of this now, seem to have brain fog, very high anxiety of course now waking up with numbness in hands and mildly in foot but always the side im laying on, goes away as soon as i move over. I am 38 yr old male, engaged 3 children, 19,12 &4. & 1 grandchild newborn, getting ready to get married start new career, so this is very tough, trying to put it in gods hands. originally the symptoms first time lasted 2 to 4 wks, this time 2 plus so far.  just wanted to share my story any response would be appreciated.

[spastic]

   Hello my Guardian Angel.  I just read your post on Stay Open to the Possibilities. I now see you through your shoes and your story what you personally went through in limboland and it got to me. My heart broke for you.
    Your my angel and helping me while I remain in limboland I just want you to know, I am here for you as well. I will have to warn ya though, spazie legs arent the only thing-sometimes my head is spazie as well! Big Bear Hug to ya Heather, Spazie legs ada

[biowham]

Good post, something I say to myself a lot, although I can't get anyone to give me the possible differential dxs--except, of course, the neuro who thinks I have half of a conversion disorder. I feel for everyone on these boards. I have a great background for understanding what the doctors are saying to me and for trying to sift through the data for what is important and relevant and what isn't, and even with that, these two neurologists and the neuroradiologist have among them left me completely bewildered. I can't imagine how confusing navigating these waters must be for people who don't have the scientific/medical background I have, or who feel too reluctant to speak up to their doctors and really require solid answers, instead of equivocation.

I'm 39. I have three "real" lesions and some punctate foci. Negative CP. Neurological signs. And two MDs so far can't seem even to agree on the results of their in-office neurological testing, even for something like reflexes (although they both, at least, find me to have +Rombergs, bless 'em). I really feel for people who have to deal with this stuff, with the fact that MDs sometime seem to be diagnosing with palm reading, instead of data. I am *not* slamming MDs in general--three of my children's godparents are doctors--but I definitely feel that there should be a reduced display of confidence from them when they can't even come to an agreement on some basic data. They shouldn't be so firm or dismissive with patients; they themselves MUST be aware of these wide variations of results of their testing.

E

[Heather3418]

Maybe the question we should ask these doctor is:  "If it were your loved one sitting here in front of you today, with the test results that I have and the symptoms I have, what would you tell them?"  "Would you dismiss them or try to find out what is wrong?"

Boy, have I ever wanted to say that to a few doctor's I have known over my lifetime.

Heather

[Nerve_Wrecked]

Thank you for such a fantastic post. I have always remained opened to the possibilities, and in fact doubt that I'll end up with an MS diagnosis (although I am still open to it!). I, like Oz "hang out" in MS forums because people there know what it's like to have weird symptoms, people understand how I feel.

My husband is very good, and very understanding, but for the most part, the people I know don't "get it", so I seek out people who DO "get it", and for me, that means MS forums.

Now, would I be devestated to get an MS diagnosis? No, I really don't think so, I'd be relieved to have answers, and relieved to have a name to this illness, and some ioda of what to expect for my future (although MS is pretty  unpredictable, I do realize). I'm already very confident that whatever I AM ill with is permanent and affecting the CNS. So, now it's just a matter of finding out what it is, and if there's any treatment that can help.

Thanks for the great post (and replies). It's good for those of us who don't know what's going on to remember there are other illnesses out there. I don't think any of us WANT to be diagnosed with MS, I think we just want to know what it IS, and what we can do about it (if anything).

Christine

[Heather3418]

I am so sorry for what you are going through.  I guess after reading my posts, you know that I really DO understand what you are going through.  It is awful to NOT know what is wrong, even though your body is telling you that there is.

I hope you find answers soon.  While you go through this, remember that you will always have us to lean on.  God Bless you dear heart.

Heather  

[Nerve_Wrecked]

Aww thank you Heather! That's so sweet.

Compared to a lot of people, I have things pretty easy, I think the worst of it is my curious and impatient mind. I am the google queen (about EVERYTHING, I just like to know stuff!), so when I can't get answers (about pretty much anything) it frustrates me, now this combined with it being a matter of my own CNS frustrates me more. But I'm on the right track. I have a request in to see a neuro who does regular neuro stuff, but also specializes in MS (and is part of the MS clinic). I'm getting set up for an LP (just waiting on an appointment from my GP), and otherwise hanging around here! LOL!

Christine

[wingnut19]

This post is so amazing that I couldn't resist bumping it up to the top


Thanks!

:)

Tammy

[MCBCON]

I am glad that I cannot relate to not having a diagnosis.  My original MS specialist told me that I could have a MS diagnosis if I want.  Or I could stay with ON as my diagnosis.

I stayed with ON for a year.  Then my Dr. said I think it is about time we give an MS dianosis.  So, I got one that easy.  The reason he gave me an option was that once I get that diagnosis it stays with you.

But, from what I read here it is not that way for some.

[Want to feel well!!!]

****bump****

[luverofrogs]

I just want to say that finding this group has been wonderful for me.  I have been diagnosed with fibromyalgia repeatedly, but have a really hard time believeing it when I'm actually told that it's being used as a waste basket diagnosis.  I have requested various test results and medical records and been denied.  I have to question why that is.  Medical records are not the property of the patient, but the drs is the most common thing that I am told.  My primary care dr hasn't been successful in getting many of my records either, just the written reports of the opinions of the other drs.  These things and the fact that whatever this is seems to keep hijacking my life and leaving it harder and harder for me to cope after the worst passes each time have me once again fighting for answers.  I have relatives who have sworn up and down for years that I have MS.  I have argued this for years, but in the past couple of years, it's one of the serious possibilities being looked at.  I've seen so many doctors and really am not all that closer to any real answers than I was ten years ago.  This new neuro I am seeing has given me renewed hope.  I'm cautiously optimistic that he will find something that explains what's going on with me.  He asked me point blank what he could do for me and I told him that if he could find out what's causing even some of what's going on with me that it would be fantastic.  I sincerely meant that.  I have never wanted to deal with the possibility that I could have MS.  When drs thought it could be lupus a few years ago, that was easier for me to deal with.  Tests ended up ruling lupus out, although they are once again running the tests just to be sure.  MS that has touched my family has just been horrible.  My aunt was an amazing because she went through such agony with it, but was always laughing and happy that I can remember.  She had such spirit.  My dad's cousin isn't expected to live much longer due to complications.  My cousin's dad (no relation to me) was dx'd with MS, then had a stroke a few weeks later and has been in a semi-vegetative state for 10 years.  MS scares the **** out of me in many ways.  I'm sure if that is the diagnosis that I get, that it'll be hard for me to come to terms with.  However, at this point, I just want and need an answer.  I don't have much of a chance of winning the war until I know which war I'm in.  I hope and pray it'll be something else like a missing enzyme or hormone or something that I can medicate and live normally.  I just want an explaination, help of some kind would be nice and to have confirmation that I'm not just making things up.  Once I have my answer, whatever it may be, I would love to help be there for others as all of you are here for those of us in limbo now.  You all do make a difference, a very important one!!

[wingnut19]

very important bump!  :)