I really need your advice..(So upset)

[Shani]

Hi everyone,

Just got back from the Neuro and the results.
All was normal, including spinal tap.
So she is like: Definitely not a case of nerve inflammation(neuropathy) as often is seen with Lupus.
"We checked for things like MS and all was normal too."
Yeah ok, but in so many percent even spinal taps/MRI's/EP's can be normal, yet can still have MS or have it sho up later!Like cases of Lupus and other immune diseases.
Ok she goes and discusses with a the Prof.
NOTE: it wasn't the one she had dicussed wiht the last time it was that old goofty Prof.that did the unprofessional EP's by me yesterday..wow.
So she comes back and of course mentions..'There is people with hyperventilation or a chronical case of this etc etc bla bla"
But I go: I'm not a nervous person..
And also, by hyperventilation is too muxh oxygen correct?Breathing too rapid or so.
Well, when I sometimes get this like now..as I've been told I'm 'crazy' once again.
I do have it a little but I also started with this weird uncomfy feeling that some people refer to as a girdle feeling and pain in the torso/ribs, like it started after sunexposure yesterday already.
I mentioned this and yeah she probably had that in mind and mentions hyperventilation+Because she doesn't know either what it is due to normal results for now.
Aswell hyperventilation, if you breathing is calm and controlled as I'd say with like tummy excercises or anything, the supposed to be tingling should go away, correct?
Or the numbness or whatever else it can cause.
Wel it's nonsense!! My symptoms are constant and they worsened, it all started to worsen when I got the flu 3 times in 3 weeks like it somehow got triggered.
Same thing as two weeks ago now, I felt flu-alike+A lady with a fzever was next to me in the hospital and yes it is self explaining.
+If this is a 'case of being nutty' again, what explains my constant pupils dilation, eye pain, worsening of heat, electric shock in back hen neck is flexed(L'hermitte my other neuro said)And like the unequal pupils, colourvision trouble, vision itself, at times doublevision, balance, loss of feeling like I can't feel my clothes on my skin and ligh ttouches or 'sense' my arm as like my brain doesn't know I have a arm.It's like it just hangs there or it's someone elses to say it like that.Heat makes it all worse..
Not to mention my damage t omybladder ,neurogenic.Or my HORRIBLE memory, I can't recall what I did yesterday or if I take my meds in the morning, I immediately forget after I swalloed-if I took it or not.And then my speech issues, I often cannot express myself or my tone changes, I sound nasal, my walking is affected.
Being only 17, it's ridiculous.
Also, if you read up hyperventilation, it mentions tingling and such or numbness but it doesn't say burning or eletrical shocks/bug biting alike feeling in limbs.It's just pathetic and it makes me so mad currently.
It terrifies me now to think of what if it gets worse and I just don't know.
The testing here was so unprofessional, that rude Prof that disd the EP's only did two out of 'all' whicg hare 4 of those.
He didn't even use actual eyepatches in the VEP.
And he walks like a drunk himself and barely heard me if I tried to explain things.

And to top it of, that supposed t obe called 'Neuro' that blamed all my symptoms and normal results on hyperventilation or whatever nutty, she was only an Assisant again!
I just knew it.
Lasst time when I went to my first Rheumatologist, he was an assistant and he also said it is definitely not a case of things like Lupus or inflammatory disease, just because I had not swollen joints yet and all.
Yeah, two months later...all those symptoms appear and I get diagnosed with Lupus and Sjögren.
It's too funny for words, mom is mad too.
I'm so upset.=(

We are going to call Rheumy friday, I know he said himself I am not 'crazy' and I wiill make an appointlment at the children neurology.We did this first but due to Neuro-opthal also being a normal Neurologist thingy in general(Weird) we cancelled it, it was supposed to be on the 4th.
So that guy was a Prof.
And unlike here, we had made an appointment by a doctor but they gave us an assisant?
They don't even probably have exerpience with cases like mine or immune related issues.
And then during the examination she also said all was 'normal' but it wasn't! I couldn't stand without falling, with my eyes closed or my arms stretched out infront of me.
Walking on one line, feet after feet, nope.
Or then she asks me to pu tmy chin on my chest, I went back up halfway (the elctrical shock) so she goes again: just put it on your chest;;
Wow.=/ I just didn't say anything
It makes me laugh but so mad too.
We'll also make the appointment at the MS center today, go to my Gp this week, I might call my Opthalmologist and ask her abou ta few eye related things which they claimed t obe 'nothing'.And we'll see...
I refuse to sit here and wait untill I feel nothing or lose feeling in a limb, end up even more limited or anything.
They just like all -bleep- doctors,, like ths assisant..send you home and don't even say: If anythign, don't hestitate to call.Or something atleast with sympathy such as 'We'll see you in -amount of month's-
I just don't understand such people but I tell you, I'll prove them wrong.
Thank you for listening to my vent...
Hugs and love.
Also in the first consult paper before all the testing, it says I know the internet 'flora' well and due to that am able to describe my symptoms good..So they claimn because I know how to describe my symptoms good and all..I just make this up because I look 'too much' on the internet?
Pathetic.

[heliotrope]

I'm sorry. Unfortunately "you're crazy" is the usual response for "I can't explain it." I wish I had good advice, but I've been going through that route on many of my symptoms myself.

Don't give up.

You know if your body is off. Keep going to docs until you find one that listens and is willing to keep looking.

Your body will eventually give up its secret.

I am back in limbo with MS (was diagnosed with Sjogrens for 6 years until a single test eliminated it). Limbo because I was diagnosed "clinically" with MS in March 2010and then my MRI (last month) turned out "clean". Along with two normal LP's.

My doc did say that MS can still be present with normal MRI and normal LP. Rare, but possible.

So here we are again, looking for 'mimics' until they give up and say it is MS. I was just checked for Celiac disease yesterday (read up on it). You might be surprised at what you find, I was.

***For those reading who know I have been on here a while, I am not in denial. I just want to make sure we have ABSOLUTELY ruled out EVERYTHING before I treat myself for MS again (I thougth he had ruled out all mimics, I guess not). I feel so much better OFF the meds for MS than I did on them.

Good luck sweetie.

[cosake]

Good luck and don't give up. You know something is wrong.

A close family teenage friend has been having lots of issues for the last year and has seen multiple specialists. She is being looked at for celiac's or lyme disease. The symptoms vary and can mimic many other types of things such as MS and lupus. She has just started a gluten-free diet to see if that improves things.

Lyme is hard to diagnose because the test can come up negative many times before you get a positive.

[Shani]

Thank you everyone!
About Lyme, it always has been ok and I can never recall beng bitten by that little thick alike thing that causes this?

About celiac, I had an endoscopy last year and all was ok there they say.
I don't think a biopsy was taken but it all looked fine to them.

[Lendi]

Hang in there. Sometimes it just takes time, I know that's about as comforting as a tornado comng through and wrecking your life.

[jumpinjiminy]

As I understand with Lyme (which I'm not completely sure isn't what I have as well), you can be bitten by a tick and never see it. My Lyme tests (both) were just .01 point away from being positive. We've spent many summers in northern WI, out in the forests in spring mushrooming, and many other outdoor activities during tick season. I don't think I've ever been bitten by a tick.

[Hutchij4]

I don't want to lead you astray, but maybe you and your family could read about mitochondrial disorders. I have ms but my 17 year old son was diagnosed with a mito disorder when he was 2. There are very serious, degenerative forms but also chronic or slightly progressive adult onset forms. It is very variable. A neurologist that specializes in mito is necessary, my ms teaching hospital is clueless about it.

http://www.umdf.org/site/c.otJVJ7MMI....BDB0/Home.htm

[cosake]

It's good that you have had other testing and things are OK.

I understand that many people who have lyme disease don't even realize they were been bitten by a tick. You don't always get the bulls eye rash.

Keep with it and don't give up looking for a diagnosis.

[Shashi]

Get a second opinion. And a third if you need one. And be patient. Sometimes it takes forever to get a diagnosis, particularly with your symptoms.

Have you been checked for Sjogren's syndrome? Lyme disease? Lupus? Celiac disease? B12 deficiency? Have they ruled everything else out? MS is a disease of exclusion, meaning they have to exclude all other diagnoses before they will diagnose MS. And sometimes that takes years.

In 2002, I started having severe fatigue in the summer. That happened every year for four years. In 2006, everything hit the fan. My toes started going numb, I started having tremors, I had weird areas of skin that felt like they were on fire, etc. I went to a neurologist (actually three of them) and had MRIs and evoked potentials and nerve conduction studies and electromyograms. Everything was normal, except the evoked potential on my left leg. I also had an LP. It too was normal.

This went on and on and on. Every four to six months, I'd have a flare up of symptoms that would render me almost immobile. Extreme fatigue was almost constant, even when I wasn't in a flare up, as were other symptoms. But the flare ups were bad. At one point, my muscles were so weak, I had to walk with a cane, but my arms were almost too weak to support me as I did.

Last October, almost five years after my first MRI, I had another exacerbation with possible simple partial seizures. This time, and MRI showed five non-specific lesions. Two of those had been present, but were not mentioned on an MRI I had back in March of last year. Finally, my perfect MRIs weren't perfect anymore, but the lesions aren't necessarily from MS. The NP at my neurologist office says they're from high blood pressure (even though my blood pressure has never been excessively high), though the MS specialist says we haven't ruled out MS yet.

Yesterday, I had an appointment with a neuro-ophthalmologist who diagnosed me as having had mild optic neuritis in both eyes at some point in the last year or so. Another piece of the puzzle in place after five years of searching.

You might have MS, and you might not. It might be something else. If it is MS, even though you might have the symptoms now, it might take years for the signs (evidence) to show up.

So, get a second opinion. And if you don't get answers again (which you probably won't if your MRI is normal), you may just have to wait. But be sure you're checked for all of the MS mimics, because it might not be MS!

Hugs,

Lisa

[Shani]

Thanks everyone.
I haven't spent time outside or anything like a park, so it'd be really odd to have that happen though.

Thank you for the link also!
Aswell Shashi, I have both Lupus and Sjögren.
First of all, they only tested my feer reflex durign the MEP?
And the Vep was so no professional.
Neuro-Opthal turning out to be just a student, didn't even actually look into my eyeballs itself, only the 'folllow my finger' tests.

I had alike symptoms and pain like you do, saw your next topic.
And yes, it's not Neuro-Lupus, my bloodvessels are ok?.
Neuropathy..EMG are ok but it only tests the big nerves.
It's all confusing but yes, I have evidence and real symptoms.
It must be another immune thing, that takes it's time to show.