How long until diagnosis was made?(Help appreciated)

[Shani]

Hi everyone,

I'm still in the progress of seeking answers regarding my neurological manifestations.
Having Lupus and already Sjögren, which already attack multiple places itself..Makes it really difficult.
As it's like my immune system doesn't just focus on specific places like MS does at all times.

The doctor that did the EP's which were only two out of four(they would do all..) he was not a nice and professional doctor.Also slightly strange.
Tests were normal (Vep and only MEP of leg reflex?)
But he thought I was blind and all and didnt' even listen to what I was saying or new my history.(Yes odd.)
They also inserted needles directly in my head?Really strange but anywho the point is...

I have many symptoms that started since October.
Basicall yall the listed symptoms that MS lists.
Paresthesias(burning, numbness and all etc)
Of all my limbs and facial, tongue.
The numbness goes as far that I cannot 'sense' my limbs or basically it's like they are not there, I don' tfeel pressure of my clothes or feel the difference in touching a towel or a soft woolen blanket etc.
Heat is a major issue.
Cognitive, I don't know what I did yesterday.
Speech is also difficult to word and explain something, sometimes slurring a bit.
Balance, I feel dzzy a lot and can't walk on a straight line and all.
Constant pupil dilated, unequal.
Colourvision disturbances.
L'hermitte as my previous Neuro said.
4 episodes of the eye pain that ON lists and the accompanied symptoms with it like blurryness that is not a lot but noticeable.
They checked this always a week or more after it started so perhaps they couldn't see the inflammation anymore or there's also 'Mild ON' that won't really show inflammation or at a part in the eye where you cannot look at?
I read about this.
Anyway, it has a connection because it all progresses and all after my Lupus flares too and mainly whe nI get a flu or a virus.
And sometimes it's just the neurological symptoms flaring, without the Lupus symptoms getting worse.

I had two MRI's done, last in March.
Both ok, but perhaps they weren't done as professional as the ycan be done in a teaching hospital.
The last Neuro (second neuro) in teaching hospital was really arrogant and onl a student...
So she said all kind of things aimed for damage in the CNS and peripheral on the examining.
Then second visit(Lumbar puncture normal, two ep's and emg normal)
She goes: Oh nothing is wrong, 'there's people with hyperventilation bla bla)No I don't have that!
The same story had been told to me two years ago, now I have Lupus and Sjögren among other things.
And only being 17, a young adult.

But ok, my main point is.
Yesterday, my toes are even more increasing in numbness and hands possibly too(both sides)
It's like they feel 'sleepy' so it's really hard to explain.
I do still sense pain so that is ok but it does feel weird if you touch it, or I may not be able to say 'you're touching my big toe' if I close my eyes and someone touches it, then asks what toe they touch.

My point is, I'm still young and it seems so difficult for a diagnosis.
Is there still hope?
It's all about the timing as my GP said and he also thinks it's that among Lupus already.
Same with my Urologist(Nerve damage to bladder, neurogenic..)
So yes, it has to be something.

Mostly it's the Lupus that started all this, but it is not neurological Lupus because it's more to do in the CNS not directly my nerves itself.

Any help would be adviced regarding how long it took you to get a diagnosis and so on.
Friday I go discuss this with my Rheumy and 11th of August I'm seeing a MS specialist.
Hoping they are willing to monitor me even if they don't immediately find it.
And November (hoping Rheumy can make it quicker) I go to the specialised Children Neuro.

[Shashi]

Did you know that Sjogren's and Lupus both can produce MS-like symptoms, the symptoms you're describing? Are you sure they're not what is causing your problems?

I have been symptomatic since the 90's. I have had two different diagnosis and now I am back in limbo.

You asked.

[Alicious]

One week.

I say that by way of letting you know that there is a huge range of timelines for diagnoses. Symptoms, testing, and who takes a look at the patient all factor in.

No matter what is going on, I wish you much luck in getting some answers!

[Shani]

Thank you everyone!
Most likely the manifestations of Lupus(neurological-
My Rheumy that has more to do with the vessels like the APS as they call it (bloodclotting) or Vasculitis.

Sjögren is often more likely neuropathies also but I don't really suffer from that I guess?
Emg's were normal.

So it's more in the CNS.
Of course Lupus all started this but I meant that it's slightly developing more into MS.
I have a friend that has the same symptoms etc, always good tests also despite him walking with a cane and all..
Same with another lady I know, they both suspect MS by them or mentioned it.

[Lexie]

i have probably had MS for 30 years but it is a mild remitting relassping form. A neuro told me 30 years ago but he would not formally diagonose it because he said that if he put it on paper, I would never get a job, I would never get insurance AND at that time there was no medications even to try to slow the progression. My relapses were very mild and mostly extreme fatigue. In a couple of days they were over. From October of 2010 until January of 2011 I don't know how I made it to work each day. Hospitalized in October with three days of tests. Then it took until May of 2011 until I got a final diagonosis. So that was about 7 months of tests and blood work about every other week. my neuro's words were "We're going to find out what is NOT wrong with you before we find out that IS wrong with you. Just try to be patient although I know how hard it is. We're here for you!