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195469 tn?1388322888

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  
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Avatar universal
very important bump!  :)
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Avatar universal
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!!
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Avatar universal
****bump****
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398059 tn?1447945633
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.
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Avatar universal
This post is so amazing that I couldn't resist bumping it up to the top


Thanks!

:)

Tammy
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420469 tn?1217647363
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


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195469 tn?1388322888
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  
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420469 tn?1217647363
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
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195469 tn?1388322888
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
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378497 tn?1232143585
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
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393986 tn?1303825975
   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
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Avatar universal
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.
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Avatar universal
bump......
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307874 tn?1242755798
I found this and read it and it is very helpful.  I will bump back to the top.
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333021 tn?1207759633
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
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Avatar universal
Bump for newbie
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220917 tn?1309784481
Yes, this is one of our gems...

Zilla*
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195469 tn?1388322888
I was asked by another poster to bring this post to the top...Here tis!
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147426 tn?1317265632
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
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195469 tn?1388322888
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    
Helpful - 0
271770 tn?1221992084
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
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230948 tn?1235844329
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
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195469 tn?1388322888
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
Helpful - 0
230948 tn?1235844329
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
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