I'm so normal it stinks!!!

[salsen]

Here we go again -- more test with nothing but great test results.  After two MRI's, special vision test, and major blood work again everything is normal.  You would think that would put a smile on my face  -- not.  I am still at a loss for all the issues that have popped up in the last year -  over active bladder, cramping in the feet, vertigo, major off and on pain in the right eye, more balance issues.  That is added to my normal neuropathy pain and tingling, upset stomach, fatigue and so on.  I am trying to get into a hearing and balance clinic to try and address the dizziness and vertigo. 

Lots of this is attributed to the neuropathy, which of course has no scientific cause.  The diagnosis of SJS years ago was strictly on symptoms and some of my doctors question it.  The only thing positive has been a test for autonomic neuropathy.  If this is the cause of all of this there is not much I can do but learn to cope. 

Not real sure what else to suggest to my doctors as to what to look or test for.  Anyone have any suggestions.  After 11 years I wish I felt as healthy as my test results seem to say.

[ErinG]

Do you have low blood potassium?  I found out that I do, so now I am taking potassium chloride and eating a banana daily.  Since I started this my potassium level has fallen into the normal range and I rarely get the feet and leg cramps anymore.  I used to get really bad cramps in my feet every night.

[JannaLee]

It is amazing with all our scientific knowledge and ability there are still so many without diagnosis.

Didn't I read, in an official medical description of Sjogren's that 30% or more are seronegative?  Why are your physicians having such a hard time with this?

YOU probably know your case better than they do.  What is your gut feeling?  If, after studying this for 11 years your instinct tells you it's Sjogren's the question isn't "what next test" it's "who new doctor."

Maybe find a physician who can rely on the symptoms, not the numbers.

Sweetie, I'm sorry for this frustrating, crazy-making purgatory where you have languished 11 difficult years!  I am hoping it doesn't take 20+ years like it did for a couple others we know!

Empathy to you, dearest!
Janna

[salsen]

They just ran checks for potassium and that was normal.  My doctors don't discount SJS they just are keeping an open mind since the test are all negative.  The reason for this last round of testing was to rule out MS since SJS can mimic this disease.  Yes I am happy it is not MS, as I wabble along and deal with the chronic pain.  My huge concern at the moment is the vertigo whenever I have to lift my head or look up.  My world feels like it has fallen out from under me and set on the fast spin cycle. 

I am going to call back again tomorrow to see if I can get an appointment at the Hearing and Balance clinic.   My neurologist has faxed a referral letter and my latest test results.  There is is a well known Dr. Arriagas who I am hoping to get an appointment with.   

I do have symptoms of SJS but then again it can fall into other AI conditions.  My worry is not so much to  have a title for it but to slow the progression of the new symptoms that has cropped up in the past year. 

Thanks for your thoughts. 

[Scottietottie]

Hi Salsen 

I'm sorry you're having such a rough time. Constant vertigo must be awful. I hope you get some answers. It's awful wanting bad stuff to show up in test results isn't it? I think it's desperately wanting validation for what is being felt. I'm glad you have supportive docs, who are at least trying to treat your symptoms.

Take care - Scottie 

[lesleyjoy]

Hi Salsun, and there's nothing we can do to make out bloodwork turn positive  I've no idea why some poeple show postive and others are always negative but we all have similar symptoms...we must have exrta-strong immune systems 

Lesley

[Patze]

Hi Salsen,

Ah, the negative tests...that is my forte' of late.  I sure know what you mean about doctors looking at you cross wise wondering if you're just making things up; it's enough to drive you crazy!

Ouch, I'm sorry to hear about your vertigo, wow, and I complain about my occasional wobble/wall appreciation episodes.  You probably have already, but have you had a VNG done lately?  If so, what did it show?

Hang in there and please do keep us updated!

Take care -

Patze

[KYMOM]

Salsen, Sorry to hear that things are not going well for you.  Makes it difficult when you go to a Doc or specialist for answers and just get more questions.  Hope you can get some answers soon. Roxanne

[missyb]

how is your diet? do you use any food or drinks with artifcial sweeteners? diet coke?

[salsen]

Patze no VNG test yet.  That's why I am trying to get into the Hearing and Balance clinic so that more testing can be done.  This is the best clinic in my area that test for these problems.  A year ago I had a constant pulsing sound in my ears that lasted for about 2 1/2 months.  MRI's were done and nothing was ever found.  As suddenly as it started, it stopped.  The doctors never could figure out this one.  Again my fear all these little hit and miss episodes are from the neuropathy that totally messes with my electrical system.  If I could just get this vertigo to disappear as easily!

I try to limit my artificial sweetener but more so my sugar intake.  Although I do not have diabetes I have a strong family history.  So it becomes a balancing act of which is the worse of two evils. 

Thanks again for all of the kind words. 

[JannaLee]

Salsen,

I completely understand your concerns about progression of symptoms!  And I think we all know you aren't interested in a title!  Who cares about that when the world is spinning!?

Much more interested in making the floor stop moving so much!

I'm praying for you to get in to the Hearing and Balance Clinic ASAP AND immediately bump into the MOST terribly clever doc who will then figure it out!

Love to you, honey!
Janna

[RitaB]

About the overactive bladder - I thought I had it too but meds didn't give me any relief.  I mentioned it to my gyn (who had a poster in his examining rooms about Interstitial cystitis) so I asked him about it.  They tested me and I definitely have it.  Took 6 weeks of treatments in his office plus I am on medication daily and watching my diet.  And the symptoms that made me think I had an overactive bladder are much better.  You may want to consider that.  I didn't have the pain just pressure and urgency ALL the time.  Unfortunately, potassium is one of the worse triggers for it.

Oh yeah, I can also identify with all of your "normal" testing.  So hang in there and stay with a dr who will at least treat your symptoms.

Rita B

[salsen]

Got a call today and I am scheduled for two days of testing at the end of May and then will see the doctor four days later.  I am pleased since this Hearing and Balance clinic has a lot of request to be seen so a one month wait is a good sign that they really listened to my problems or my neurologist really filled them in on his letter of referral.  The testing should take about four or five hours so they split it into two days.  I need to do some research on what type of testing is done for vertigo and dizziness.  Anyone know? 

As for the testing for cystitis that was done a year ago when the problems first started .  I had xrays, mri cystiscope, blood and urine test all done to see if there was any problem with the system ( infections, tumors etc)  Again all was normal so it was labeled OAB either idiopathic or possibly caused by autonomic neuropathy. 

Thanks for all the help.  At least hopefully something can be done to calm this vertigo.