Stress of diagnosis, no diagnosis

[chrismoo]

My wife has been undergoing diagnosis for MS.  The first Neurologist who took us on said after some basic tests and a couple of flare ups and inspecting an MRI that the issue was not MS but psychological.  He said seek psych help and look at is as a stress related issue.  He recommended we go for a second opinion  too which we did.  After a spinal tap, SSEP, VEP the second neuro has come to the same conclusion as the spinal tap tests were clear and so far no lesions have been found.  It is not like we have been chasing MS as an answer or end goal but her symptoms all seem to point to it but there is no diagnosis other than sorry it is stress related or in your head.

Anyone else come across this and have any advice?  Anyone experienced it all being in your head and not actually MS?

Would appreciate any advice or comments.

Thanks

[Lulu54]

Please come back and let us know how it goes .... we're here to help you navigate this maze.

Lulu

[chrismoo]

Ok, that's what we do next, thanks all!

[Lulu54]

You definitely want to schedule the psychiatric evaluation and get that one off the table.  Because that is now in her records, you need the eval that says it is not a psychiatric issue.  I know it seems ridiculous, but its a necessary step at this point.

Please know that many of our forum members have taken this step to quiet the disbelieving neuros.

Once the eval is done, then you can again see the neuro and ask what they think is wrong.

stay in touch,
Lulu

[jensequitur]

Yes, unfortunately.  

The thing to do next is to go to a psychologist, whether you like it or not.  There are several tests the psychologist can do to ascertain whether it's really 'in her head' or actual organic damage.  When the psychologist decides that it really is a neurological problem, then you can take that data to your next appointment with a neurologist.

There are many people here and on other forums in what we call 'Limbo-Land.'  For some reason, if a neurologist can't figure out what's going on, they'll blame the patient rather than admitting that they don't know.  

Has your wife had a spinal MRI at 1.5T or better?  Sometimes people have lesions in the spine, but not the brain.  If she's having leg and arm weakness, it's possible that there's a problem in that area.

The bad headaches coupled with the weakness and vertigo sounds like she might be experiencing migraines with aura, but the paralysis wouldn't last for months afterward.

[chrismoo]

She has not seen any psych as yet but that may be the next step simply to rule out that excuse/diagnosis that they seem to have fallen back on.  We will go somewhere not recommended by either of the neuros although there are few in the area I think and they are all very busy/booked up.

I'll be around here for sure trying to figure out more and definitely am interested in everyones else's experiences and issues.

Thanks for the great welcome Lulu!

[Lulu54]

Hi Chrismoo, (and babyatlas too!), welcome to the MS forum here at Medhelp.  If you stick around here you will quickly come to find that you are not the only ones searching for answers and being told it is only psychological.

Are you saying your wife did see a counselor and that was the professional take too?  With all that is going on, if you tell me yes, then my next question is - did your wife see a psychiatrist that was recommended by the doctors who had already told her it was in her head?  If so, you want to go get another evaluation done by someone NOT associated with the doctors.  The experts easily influence each other with their referrals and notes.

You know your wife well and obviously do not this this is a mental health issue - but a very real physical problem.  She is lucky that you are on her side ....

We have another member here right now who is also experiencing paralysis and has been told it is conversion disorder (CD).  The unanimous opinion here is that means she has a very lazy doctor who has put little effort into finding answers.

The truth is you don't have to have visible lesions to have MS - we know lots of destructive action is going on behind the scenes.  You also don't have to have evidence in the spinal fluid from the LP either.  

I hope you will stick around here and learn more about MS and see if this adds up for your wife.

My best,
Lulu

[chrismoo]

Yes they have said the issue is likely psychological, I don't understand how though nor believe it.  Is it the standard response for when they simply don't find lesions?

[babyatlas]

i just joined this board a couple of days ago and am at the very infancy of my understanding and search BUT it sounds like her symptoms are more than psychological.  has she seen a counselor/psychologist  - do they too think her problems are psychological in nature?

i am sure someone more experienced will weigh in on this soon.

[chrismoo]

Probably the more frequent occurrences over the past year, before that every like 3 years or so.  Severe headaches, dizziness with vertigo.  Extreme tiredness and issues twice now with some paralysis down the right hand side.  Numbness and weakness down the one side, loss of feeling and creepy crawly skin feelings.  Slurring words when bad headaches or spells come on with the paralysis.  Paralysis last time stayed for months reducing her to a wheelchair, still using a cane for longer walking or bad days.  Cognative issues with thoughts and words.

[babyatlas]

i will be interested to know what others have to say regarding your question.  i am VERY new to this topic but i did notice a thread here yesterday that said something along the lines that just because you have no lesions on an MRI, it doesn't mean you do not have MS.

what are the symptoms?  how long has this been going on?  i hope you find the answers you are looking for.