Questioning my diagnosis

[risnerrose]

Here I am stepping out of the shadows again, as I do whenever I have questions.  I have relocated, and am not enjoying the process of finding a new neuro.  After today's appointment, I felt like I needed to see a psychiatrists. . . And I already have a diagnosis.  It seems my MRI has not changed in five years.   That along with odd joint pain is causing me to doubt my diagnosis.  I asked the neuro if It was possible that I had something else.  He never gave a legit answer . . . Just kept saying he had to go by the diagnosis my previous neuro gave.  I am not sure what I think, and I do not want to start copaxone (was on betaseron for a year) if it won't make a difference.  

All advice is welcome and needed.

[HVAC]

Rose,
   MS is different in everyone. I have been one of the lucky ones where my MS plateaued for 40 years. I still doubted my diagnosis up until recently when it started accelerating. Progression happens with or with out symptoms so it is important to be on a DMD if you can be. I used to think a the Doctors had it wrong. Part of the denial is a coping mechanism.

Alex

[sllowe]

Rose,

Nice to see you. Well that reply would make anyone 2nd guess.

They seem to always leave that 1% open to another possibility, or an new discovery of a disease in the future - that's nothing new. But, to leave you with just have to go w/previous dx is cowardly and unprofessional.

If this doc has other thoughts it should be ininvestigated (w/your permission of course) for goodness sake. If the doc reviewing everything goes w/you original dx then so be it. Least you'd have some confidence in the dx. That confidence would help keep you on your DMD schedule because you could trust it.

If I'm remembering correctly, you previous doc did quite the investigation right? Please correct me if I'm off w/that. ...

You went off the beta?  Are you as active as you use to be? Stiffness and joint pain comes w/the territory when we are less mobile for sure - I know I'm not so limber either from doing less. Like Mary mentions briefly, MS doesn't exclude us from the rest of issues....

Sorry you have to deal w/the doubts of this and the move, Rose, but glad you came on and brought it up.

-Shell

p.s. could you call your old doc and get a good reference where you are now?

[supermum_ms]

The answer is YES!

Its entirely possible for you to have multiple years between activity, i'm sure Quix went into detail in one of the similar posts. There was also something about it discussed in the benign MS topics, you'd need to look it up. Sorry we're in the lull after the second flood for the day, so dont at the moment have the energy to look, fingers crossed that i'm not up to my shin in water again. lol

Cheers........JJ

[mistylee]

Just a question then.  Can a person with MS not on DMDs have a stable MRI for 5 or 6 years with no new lesions???

I am in limbo, the neuro is waiting for a new lesion to show up but nothing for 6 yrs. I already have 8 or more lesions with symptoms suggestive of MS .

He told me that a new lesion will confirm the DX as would a positive LP which I am not going to have at this stage.

So is a stable MRI for this long still MS or does this mean it is more unlikely.  I have spasticity, hyper reflexia, etc.


Mistylee

[twopack]

I don't know a lot of your history but I do know that it's not unusual to question the MS diagnosis from time to time.  Even with the advent of MRI and LP findings, MS remains a diagnosis of exclusion.  There will always be room for doubt.

My MRI doesn't seem to keep pace with my increased symptoms either.  But if a lesion doesn't care to show itself I'm not about to coax it out of hiding.  For right now, I am content to measure my disease progression (or lack of it) with observational signs and functional assessments.  

Last time I doubted, instead of asking the MSologist if he was sure of the diagnosis, I asked if there was any possible value in looking at an alternative diagnosis for my sympotms.  The answer to that was a clear, "NO".

I'm on Copaxone for a year now.  I'm not sure if it's making a difference for the better.  I figure I'll never know unless I give it a try so I stick with it as long as I'm not getting a lot worse.

If joint pain is a new symptom that doesn't fit, it may be because it's caused by something else.  Unfortunately, MS doesn't give us immunity against things like degerative joint disease.  Sometimes we have the misfortune to add a new diagnosis to our line-up.

I'm with Bob.  An unchanged MRI is the best we can hope for.  An unscarred and unshrunken brain is a thing of beauty.  I'll settle for nothing new.

Just one caution for you.  Sometimes, when people here have voiced their doubts .......
their MS has tended to put an end to those doubts with a wham-bam of a flare or exacerbation.  There's probably no connection.  I hope you get to hold onto this denial and hope as long as you need to.  Still, it does seem to happen that way a little too frequently.

Hope you can develop a good working relationship with this new doc - or another one near your new home town.

Mary

[COBOB]

If you were on a DMD, you should expect that your MRI doesn't change.  That is what we all hope for from our DMD.  I'm a little frustrated right now, because I'm having issues, but I have only been on Copaxone for a couple of months.  It can take 9 months for Copaxone to provide any reduction in relapse rates.

I'd say having a stable MRI is great.  That is where I want to be with my DMD.  Fingers crossed.

Bob