For the diagnosed: Do you ever question your diagnosis?

[essdipity]

I mean, even secretly, in your heart of hearts?

I do, fairly regularly, but just to myself. I wonder whether somehow it's a mistake, that maybe I'm subconsciously inducing my symptoms, or making them worse, or noticing them too much. Yes my MRIs are abnormal, but not in the way MS most often presents. Yes, my neuro told me a few years back that I have brain atrophy from MS. And so on. But still.

I'm seen at a world-famous clinic, for MS, other neuro disorders and pretty much every other medical disorder out there, number one in US News and World Report, so I'm sure they know what they're doing. Yet so much about MS is subjective. Like for instance, fatigue. Sure I have it, badly sometimes, but doesn't everyone? Doubting myself is easy. Certainly something is wrong, yet being sure it's MS is hard for me.

Today, though, when I was in for a 'tune-up.' I became a believer again. There's no way I could influence those strength and reflex tests, and some of them were really off. I not only think I have muscle weakness, considerably worse on the right side, I demonstrably do. For me, at least, this disease is very strange.

ess

[Sierra28]

I'm with you. Undiagnosed, but I know something is wrong. Everything but MS has been ruled out, but my doctor says he doesn't *think* it's MS. So what's left? Living in limbo until some doctor decides to name my set of symptoms after himself and say he's discovered a new disease/syndrome/whatever, I guess!

[rendean]

I feel like sho. I do doubt my dx because like sho, my symptoms are atypical. All my tests were negative, even my 2 lesions were considered "too round" to be MS. This from 3 neuros.

Even one of the top neuro-opthalmologists in the US called my MS "presumed" in a letter to my neuro when doing an exam on my eyes.IVSM doesn't help my relapses much and my lesions don't enhance even when an MRI is taken during a hospitilization for a severe relapse landing me in Acute Neuro ICU.

I wonder if something else is being missed but have been tested for everything under the sun. As my current neuro told me on my first visit to him, nobody will be 100% sure if it's MS until they autopsy my brain. Hoping that's a few decades away :-) !

Ren

[shoshin]

I guess I don't doubt my dx in that way. There are subjective things, sure: the fuzzy-headedness, the fatigue, the bizarre cognitive slips. But there's enough wrong with my sensation, motor abilities and balance that I don't think I could just induce. Plus there's the hard evidence: failed somatosensory evoked potentials, spinal cord lesions, o-bands.

What I wonder is: Do I have MS or do I really have something else? There is enough atypical about me that there is room for doubt. In fact, if all someone had to go on was my brain MRI, I would have trouble getting dx'd. I have tried to broach this with several neuros and gotten nowhere. It seems like people are often getting un-dx'd on this forum, but I can't get anyone to seriously reconsider mine.

sho

[Lulu54]

For sure I doubt my dx, and do so quite often.  I even challenge my MS neuro about it and he confidently says I have MS because he says so.  :-)  

He also says he loves it when his patients question their diagnosis, because it means we are feeling good and doing well on our drug therapies. Well enough to believe that maybe we don't have MS aftrer all.

Unfortuantely all my tests are classic MS and I can't deny the evident.

Keep doubting and wondering, ess. I'll keep you company.
Laura

[KristineH]

I don't have a diagnosis. In fact, I have been told I don't have MS. But I keep ending up back here. I just want to know what's wrong with me. Because something is definitely wrong with me. I know that many of you can relate to my frustration... whether this turns out to be MS or something else...I know in my heart of hearts that my mind is not making this up, even when I do have the doubts...and it's so frustrating. I would give anything to just make this go away and feel better and go back to living my life. I was a runner and (obviously) a really active person....my whole life has changed because of the fatigue. I hate it. It feels like it would help to at least know there is a reason for it, that I'm not crazy.

[Rena705]

I was diagnosed with MS in 1993 after having Grand Mal Seizures.  Of couse I really doubted my diagnosis back then...I could find NO info on seizures and MS back then but we didn't have computers then either.  I was diagnosed by Dr. W. (we will leave it at that but the Dr. "W" is relevant in my story)

Then I was in a state of "no MS symptoms" until 2007.  Then I had a doc named Dr. M.  I tried to get in to see her when I had my first episode of severe "ice pick" type pain in my head and my left eye was drooping badly.  They told me I couldn't see her until the following week.  I went to see a gp at my gp's office.

This gp sent me back to Dr. "W" as she felt I needed to see a neurologist stat.  Dr. W. diagnosed me with Paratrigeminal Neuralgia(PTN) and I was told it would go away in a year at the least.  This is what cause the "ice pick" pain in my head and he stated it was a type of migraine.  B.S. is the only way I can print it here besides...GRRRRRR!!!  I looked and looked for people with (PTN) and found very little on the subject.  You have to remember that this is the research head at a hospital that diagnosed me with this.  He put me on Lyrica, 75mg/3xday!  I lost my vision, I couldn't talk and the vertigo was nasty!  This was the day after starting the Lyrica and my pharmacist told me to not take anymore Lyrica.

So I figure that I should try to see my regular Neuro, Dr. M....it was 4 weeks later when they fit me in regardless that I was still having vertical double vision and had to wear a patch on one eye in order to see!  She proceeded to tell me that my problems were NOT related to MS and that Dr. W. had just over dosed me and it would go away.  This was FOUR WEEKS after taking Lyrica for ONE DAY!  grrrrrrrrr

So I go back to Dr. W. thinking that perhaps I can get help from him.  Dr. W. sent me for a CT Scan and he didn't find anything that had changed...should I have been surprised...I think NOT.  We then argued for months and months that I needed an MRI and he kept telling me that he had just done one EVERY TIME I SAW HIM.  It took FOUR YEARS for him to realize that I hadn't had an MRI for years...he finally pulled out my file and actually looked and realized that I hadn't had one.

At this point I am ready to give up on the MS diagnosis completely!  This is the "specialist" that diagnosed me in the first place and it took him 4 years to figure out that I was long overdue for an MRI?   Doubt has been a huge factor in my life since 1993.  It has been frustrating and very sad really...I have missed out on a lot in life because of this Dr. "W":.  He was a really nasty bugger too and I am so happy to be rid of him.  I hear he is retiring and I can bet he won't be thrown a retirement party by any of his patients because I have yet to hear a good word about him!

So now I have a great doc...Dr. G. and I have been diagnosed with Secondary Progressive MS and he is a doc that I can talk to and he pretty much always follows through with what he says he is going to do.  The PTN is NOT part of my MS and the "ice pick" pain is a daily occurence now.  I almost feel like I have been ripped off and I should go after the b*****D legally because he really didn't have a clue as to what was going on with my brain.  Dr. G. has me on a pretty good dose of meds now and things are not too bad.  At least I feel as though I can go to Dr. G. with any new symptoms and he is going to take them seriously.  

I think we would all be crazy if we didn't doubt our diagnosis and that is for our own protection I think.  Dr.'s are not Gods and they can't get it all right and I can understand that.  I just wish that Neurologists would go back to school and learn how to listen to their patients...there are way too many that simply don't know how.

Lots of Hugs,
Rena

[Sailorsong]

I never question my DX.  It took me over 20 years to get it and I knew that I had MS for at least 10 years before I finally got my DX. There are many people in my family that have/had MS so I knew from what they were going through that I had MS.

Dennis

[jen673]

I second what you all have said.  I was quickly diagnosed and surprised.  I think because it was a surprise and my symptoms have been mild I really doubted the diagnosis.  My neuro is an MS specialist and my MRI shows many nasty white lesions and spine.  I even went so far as to ask my neuro how confident and sure he was about my diagnosis.  I felt rude but I had to hear him say 99.9% sure to believe it.  Today, I still find it hard to believe.  My mind knows it but I can't seem to convince my heart :(

Jeny

[doublevision1]

Thought I must be the only one who didn't question my dx, till Kyle came along.  

[maxthecat43]

Actually, I was dx'd in 2011.  I had my first MRI in 2010.

[maxthecat43]

I still question my diagnosis, but not in a serious way.  I think mine comes from my past experiences with the medical profession.  I don't even remember how many times over the course of the last 30 years, so doctor or other was "certain" I had some serious disease or other.   It wasn't until 2010 that I finally was diagnosed with one though.

I guess that means I now routinely distrust my doctors to really know what's wrong with me.  I know it's silly to question this dx though...  Multiple MRI's, optic neuritis, trigeminal neuralgia, in addition to having a full leg brace, an electric wheelchair, and receiving disability benefits.  Somehow, I still sometimes feel like this all going to go away, and be a misunderstanding.  A form of denial?  -Yup!

[kwarendorf]

I do not question my DX. Too many disparate dots that were previously unconnected are now connected.

Kyle

[sllowe]

Oh yea, I sure have. In the beginning, middle, and even present.

It's not like I think about it every day, but absolutely yes. It pops in there from time-to-time. Like a thorn or stitch that's never really gone.

For me, feel like it's largely due to the lack of that "one" test that says, you have MS "guaranteed." Geesh, does that sound greedy of me or what? I mean there are no real guarantees in life are there? So what is my problem? I know it's not denial. It's just the garden variety of it all - the gross differences, etc.

Isn't there enough proof in the damage and the lack of other reasons and where the heck is my trust in the professionals who know MS like the back of their hands? I could go on and on over it, but in the end, add me to your list of those who share similar thoughts. Is what it is I suppose.

Glad you brought this up :)
-shell

[dogmum]

Wow, what a great thread.  Hearing that I'm not the only one to do this is reassuring.  It's crazy because when I first heard MS and went to look it up I broke down and cried and was really freaked out about it because it explained years of the unexplained and I "knew".  

I've heard many times since that I had conversion disorder or some other somatic disorder and once my psych evaluation came out clean and bright, they just said I had nothing at all wrong with me (while doubting my psychiatrist's skills, I'm sure.. lol).  Now they tell me it's MS and maybe MG, but I'm feeling better and having doubts about it all.

When I really start doubting though, my thoughts always come full circle when I remember my one giant pupil and vision issues in 2011, the brick-in-the-face experience of TN, and the many times I "almost" made it to the toilet (hate that!) and so on.  It's kind of a daily process of doubt, denial, and acceptance.  Hoping it gets better?  

Thanks for sharing this.  <3

[HVAC]

Yes. I also sometimes can't believe I have Cancer. I think it is a coping mechanism in my case.

Alex

[Mummy76]

I doubt my diagnosis every day.  I spend a lot of time on the Internet looking for an alternative diagnosis.  I even contemplate quitting Copaxone.  My MS Neurologist did not seem positive when she diagnosed me and nothing since then has convinced me that it is definitely MS.  

Like you, I wonder if by thinking about my symptoms, my body is somehow exaggerating them.

It's been a year since my diagnosis and I've just had another MRI so I hope things will become clearer for me shortly.  But, perhaps I am just one of those that will never accept the diagnosis, regardless of the evidence.

[Ojibajo]

LIke doublevision1 I was also somewhat relieved then the neuro said that she suspected MS because when they called and said I needed to come back in to discuss my MRI. The two things that I immediately thought were Brain Tumor and Aneurism. Even some of the MS mimics that I was tested for sounded much worse than MS.  So when I was diagnosed with MS, it was almost a relief.

Also I at least I finally knew why I had been ridiculously fatigued and feeling so lousy for the past 3 years.

[Ojibajo]

Yes, I do a lot.

At first before I was diagnosed and they suspected that I had MS, I questioned it because I was shocked, it made no sense and it came completely out of left field.

Sometimes I question it because I feel absolutely fine, while other times I am reminded, yep sometimes is definitely wrong with me.

Sometimes, I actually worry that I have been misdiagnosed and that they we will go back to, "we have no idea what's wrong with you" We have no idea why you are fatigued, weak, have muscle spasms, etc.

I actually worry a little about this because my cousin's wife was told that she had MS a few years go and had this diagnosis few a few years and has now been told that she has been misdiagnosed and she doesn't have it. She also no longer has any symptoms. I don't know her very well, so I don't have a lot of details on her situation and I don't feel comfortable asking.  But because of this when I finally "came out" to my sister that I have MS, my sister asked if there was a possibility that I was misdiagnosed like our cousin's wife. I had to assure her that they are pretty convinced that they got the diagnosis correct. I told her about the MRI and the LP and how they used them to make the diagnosis and how I have MRIs every year.

[SarahL2491]

Funny, I often feel as you do ess!  I think we are all a little surprised to find that we are not the only ones who feel this way!

I got the "ice water in my veins" feeling when in 2004-2005 my research brought me face to face with MS, and I said something similar to "oh crap"
and must say that's the only time I have ever felt that ice water feeling.

I then spent the next 6-7 years trying to prove/disprove it.  When my neuro finally told me, I don't think I heard much after the "you have MS", I was numb.

But...yeah, I've often felt that surely they made a mistake, when MRI after MRI, the radiologist says no indication of MS, and I go back to the neuro and he assures me its there and points those pesky little lesions out to me and gives me a hug and I go away but when I have several good weeks in a row, I always secretly go thru those denial periods.  

Like immisceo, I think that we automatically try and dismiss it when its full of unknowns and it writes its own script as you ride along, totally in the control of a disease that doesn't listen to you but does what it wants.  

In the quiet of the night when I am conversing with my heart of hearts, then I can admit I'm confused, scared, feeling loss of control and have earned the right to a few moments of total denial before having to wake up and smile and wonder what it will throw at me today......

[immisceo]

*rite!

[immisceo]

I think questioning it at some point is kind of a right of passage. It's almost like the 'stages of grief'. It's the stages of diagnosis! Fear, denial, bargaining, etc. I've done the lot. And depending on how vulnerable or off-kilter I'm feeling in other areas of my life, a stage can randomly show up again if I'm honest.

It's very irrational on my part (and hasn't happened in a while). If nothing else, I was approved to be in a trial run by a large pharmaceutical company. There's no benefit to them to collect a bunch of data on people who don't have it for sure and the screening process was exhaustive. So, in a round about way, capitalism has made my diagnosis about as undeniable as they come!

But to come back to you, Ess, I think it's really, really natural. It's a doozy to get a diagnosis that's not going anywhere and that involves a future full of unknowns. It's only human to 'think it away' every once in a while.

[doublevision1]

I've never really doubted my dx.  In fact, when the Lhermitte's started in 2006, and when my GP, to my complete surprise, uttered the letters "MS", I think I knew from day one that I had it, even though the first MRIs were clean, another GP said that this "ruled out MS", the first neuro said she "sees no sign of neurologic disease" and about a year passed with no other symptoms.  

The morning I woke up in Sept 2007 with a mild tingle in my right hand pinkie finger, I knew for sure in my heart this was MS. In the days that followed, with another new symptom every day (exhaustion, then tingling and numbness spreading to all four limbs, then pressure on my ribcage then loss of balance, then double vision, etc etc), this was all just confirmation of what I already knew.  I didn't need an MRI to convince me at that point, thought of course one was done and it convinced the docs.  Those few who knew what was happening with me were all in denial; I wasn't.  A bit of a side note here, but this is when the phrase "think positive!" became like nails grating on a chalkboard to me.  I KNEW I had MS, and they were sure that if I would just "Think positive!!" it would not be MS.  At the time I found it irritating and dismissive.  Looking back, it's actually offensive to me.  Anyway, I digress.....

The only time I thought it might not be MS was when neuro began testing me for NMO/Devic's disease in early 2009.  Then I hoped with all my heart it WAS MS and not NMO.  When faced with something worse, MS doesn't seem so bad after all.

I'd love to hear others thoughts on this.  Another great question from one of our CLs.