i was told i had ms for 6yrs now they say i dont

[susan261077]

hi, im a 31 yr old women
about 6yrs ago i had a flu or something like that ,after a few days i felt numb on my left side.
my hubby took to the ER ,they sent me to a neurolagest, who did a MRI.
after i came back to him, he said it was MS.(even though i need more then 1 test to  confirm it is MS)
so i was put on betaferon,before i  started it i found out i was pregnent, so  i had to wait till baba was here, to go on the  treatment..
but went blind when i was about 9 weeks preg.....
my eye sight came back a few weeks after i had the baby,
then i was 100%back to my normal self
i just felt i didnt have MS
and was sick of  injecting my self  
he told my of a good new treatment and i only had to go to hospital once a mth called TYSABRI i was on for 14mths
i went for a second and third apinion
but they all thought i was seeing the best neurolagest they didnt have anything to add
i went to see the head MS Neurolgest in the hospital i went to
she looked at my MRI's she thought it wasnt MS
then i went overseas to the american universitie hospital in lebanon the neurolagest  saw my test results
he too thought it wasnt MS ...
now ive had
:blood tests,
:nerve duction,
:MRI
and some optical test
ive been tested for Devers about 4 times but nothing is showing
and now im in a wheelchair im so weak i cant even sit my self up
I drag my left leg and my left arm is so weak .
my right side is starting to get weak ,
they tell me its all in my head ,how ???
i dont want this,i loved my work ,i want to go and be part of my kids life, like all the other parents  


PLEASE CAN ANYONE HELP ME

[susan261077]

im still lost ... keep calling my neurologist ....but there not getting back :(

[susan261077]

hey jj,

thank you ill check them out  

[supermum_ms]

Hey Susan and fellow Ozzie,

I also read another post where you are basically asking if [undx] can just be living the symptoms of MS but not have MS, well the answer is yes, see the health pages on conversion disorder. There is a resent inclusion that is very well written and i do recommend you read it, there are also quite a few posts on the topic because when the neurologists cant get a slamb dunk obvious case of MS, they tend to blame it on a mental health issue or even migrains.

You might be interested in reading about the type of MRI strength used, there can be issues with the 1.5T (or lower) which is less strength and validity than the 3T, there isn't many 3T's in Australia from what my research has picked up. Though now the software is getting improved so sometimes the 1.5T with the newest software can be just as good as the 3T.

But having said all that, if conversion disorder was a 'real' posibility or even when its just a load of rubbish, its still in your best interest to get your mental health fully explored. If nothing else it will help to point you and your dr's in the right direction to help you. Seriously, if the phyc's can not find a mental health issue like conversion disorder, then you will know it IS neurological. If they do find a metal health issue that fully explains what happens to you (depression and anxiety do NOT) then you will still be able to get some help. btw approx 33% of people dx with conversion disorder end up being misdiagnosed.

I was mad as hell when my mental health was questioned, still am if i'm honest. I had a neuro-psyc assessment that found significant loss of IQ which indicates there is something wrong with my brain and had my mental health fully assessed that found NO mental health issue at all, so I know what is happening to me is neurological and in of itself that's my validation and even though i wasn't happy doing the tests, now i think it was the right thing to do.

I hope you read the health pages.

Cheers........JJ

[susan261077]

hey guyz,

thx lots for the support
just wanted to add,im seeing an other neurologist, other then the one i was seeing at 1st that diognosed me with MS
every doctor that meets me at 1st thinks it is ms,then i get told they dont think it is .


dont know wht to do

lost sue :(

[Sparkysarah]

Just sending you loads of support and I really feel for you. There is something in your post about losing trust and belief in doctors and this can make one feel very small. Never lose belief in what you have experienced as your own inner voice can be a great strength.

I hope that you find some answers and some doctors who are able to enlighten you on your debilitating situation.

With best wishes

Sarah

[susan261077]

Ok the 1st doctor i saw sent me 4 an MRI and based on it he told me i had MS.
As i was reading about ms, i just felt it wasnt talking about me
thats why i thought, i just didnt i fit in
thats y i thought about seeing other doctors ....
:i was blind in to eyes
:im in Australia, the hospital i go to is Liverpool hospital
:the hospitals that reverted the ms was the american universitie hospital and liverpool hospital when i got back 2 australia, the doctor there said my MRI was about as normal as any1
he thought i might have i think it NO but i was tested 4 that 5 times but it was negative,
now my doctor tells me we will try cleaning the blood next week  

i dont no anything anymore :(

[RedFlame]

Hi Susan,  I am so sorry to hear all that you are going through!  You have found a really wonderful support group though.  Welcome!

I am curious too.  When they say 'it's not MS', then what are they attributing your symptoms to?  


Hugs,  lois

[Lulu54]

Welcome, Susan.  I;m glad you found us here. As JJ said and proved in her answer, this is a very smart and compassionate community.

Surely you are dumbfounded by this reversal of the MS dx.  With the symptoms you describe, this really doesn't make sense.  In relapsing remitting MS, it is not unusual to go long periods of time without problems.  Our bodies are constantly trying to heal ourselves and in your case the Betaseron may have given it the extra boost needed to keep you healthy.

JJ is right about the pregnancy - it usually does quiet MS, but that's not a guarantee.  You can be pregnant and have active symptoms.  This disease is so MySterious because everyone seems to present in totally different ways.  There are no set rules for MS.

I hope you will answer the questions JJ posed and give us more information to ponder.

It is bad enough to be told you have MS but to then take that dx away and not offer another answer because *its in your head* is totally unacceptable.  I am so sorry you are going through this.

be well,
Lulu

[supermum_ms]

Hi Susan,

Welcome to this wonderful place, though i'm sorry for the reason why you've found us. Just in case you dont know, at the top right of your screen is a yellow icon, they are our health pages, they are well worth reading.

I'm still trying to understand why the MS dx was taken away from you, though you are not the first person who this has happened too and i'm sure you wont be the last. I have to assume that when you first went numb on your left side and ultimately received the MS dx, you had enough lesions and consitent MS symptoms to fulfil the Macdonald criteria and to satisfy your original neurologist. so what changed, did anyone of those specialists tell you why you couldn't have MS?

You lost your sight, (was this one or both eyes?) which could very well be Optic Neuritis (ON) but you were pregnant at the time, MS is more often dorment during pregnancy because of the immune system being supressed, somethings off here but not totally.

You've been on DMD's for 5+ years but were you symptom free during that time or did you still have relapses? Sorry but i got the impression that because you reverted back to your normal self, you didn't think you had MS and the reason why you went looking for a second opinion, to be sure. Are you saying that you were symptom free all the years you were doing DMD's?

Again sorry, i'm not a dr just trying to understand how this happened to you and how to help you :-) Ok i would be doing is going back to neurologist 1 and tell him your MS dx is in question and you want to be sure that what is happening to you is MS. I'm not sure if you should mention you've already seen a few other neurologists or not, tricky for sure!

If all your tests are negative for any of the MS mimics, then how have these neurologists explained their thinking, did you get anything at all to explain why they think you dont have MS and its psychological, anything at all?

I wish i could be of some help, i'm sure the others will be on line soon.

Cheers......JJ

PS. curiosity which hospital took your dx away?