Your Diagnosis Journey

[fluffiebunnie]

I know my "journey" has so far been relatively short, but it has been stressing me out and causing me to get depressed.    I wonder what other people's experiences have been on the diagnosis journey?

I started off with doctors thinking I had mumps back in September and this has led to endless appointments.I have had ENT appointments, millions of blood tests, Rheumatology appointments, planned Neurology appointments, etc...

It amazes me that before September I never once saw a doctor about anything, but now I am seeing them every five minutes!  So far since September my symptoms have been:

Swollen partoid glands (that were up for three months)
Dry eyes/mouth/nose
Painful neck/shoulder area
Hard lumps under jaw (which I think are more saliva glands?) that are painful sometimes
Stabbing pains in neck/ear area
Fatigue
Pain in muscles and joints randomly
Raised liver function tests
Numb face (GP diagnosed bells palsy)
Numb arm and fingers left side
Tingling hands and feet
Numb hip/pelvic area right side
Weight loss
Higher temperature
IBS Symptoms
Itchy skin
Pre-diabetes diagnosed
Sleep problems
Memory problems

I know most of you will have a longer list, but am interested in how things progressed with yourself and to how they put it all together to get your diagnosis if your blood tests were negative for SSA/B?

[ryno104]

TAKE BARIUM CARBONATE  IT WORKED FOR ME.

[Crabcakes]

You ARE kidding, Ryno, no? Barium carbonate is toxic and used in rat poison. I would not advise anyone to ingest this substance.

[fluffiebunnie]

TAKE BARIUM CARBONATE  IT WORKED FOR ME.

No thanks!!! Rat poison?

[navydad]

Mine started off with weird symptoms,, of course al the usual bloodwwork proved normal,, trips to ER,, back pain,, more back pain,, more test,, that led to a DX of a mental illness, so frm there it was only a short jump and a hop to being told I was nothing but seriously depressed,, hmm,, guess thats why my eyes went dry,, weird infections,, and the such
then told by a immuno,, we know whats wrong with you,, your deficient in IGg ,, IVIG will fix you up, 6 months of that and I was not only worse, but it seemed sicker,, finaly sent to top rheummy in Pittsburgh,, A Dr. Medsger, he listend to my story,, and said I dont care if you dont show antibodies or not,, you have SS,,
  Well in July of last year my feet started to burn badly,, of curse my GP said,, you have a bad back so the nerves are doing it,, that didt sit right,, til new Neuro did biopsy,, came back periphal neuropathy,, told me if you have it in your egs,, its in your arms too,, no wonder the muscles in my arms ache and cant tolerate sunlight on them
  well the next move is to see if something else is ging on,, a muscle biopsy,, thats next week,, a gastro wanted to do a colonoscopy on me this friday and a hida scan to check my gallbladder and liver,, ,, he said he can check the spleen too,, I just dont have anything left in me to get it dne,, I am so tired of fighting this thing,, in two weeks I have had about 9 doctor appts,, its insane,, plus having a family that has buried there head in the sand abut me,, and refuses to even cnsider looking up SS hasent made anything any better,, good luck to you,, I hope your journey to a DX is short,, and not SS,, and hopefully somethng easier to DX,,

[Pisces24]

I guess my journey really started in 1998. That is when my gp said my blood numbers were starting to climb. By 2003 they had gotten "abnormal" enough for him to send me to specialists to find out the reason why.
2003 = onocologist, tests run & lymph node biopsy - 6 mos I don't have to see her again, (I think i am cured), see gp and he says no #s still off and sends me to another one, etc. etc. X3 or 4.  2005 I start to see yearly an internal medicine specialist  who diagnoses me with indolent lymphoma. Says is sure it is some kind of cancer but don't know what and I don't have the symptoms I should have and I am not sick enough.  - more CT / MRI scans and a needle aspiration. Two spots found on left lung 2007 so I see a pulmonologist - they have gone down since last ct so no surgery needed just want to "watch" em.  End of 2008 I start seeing an immunologist. March 2009 he runs a test for SJS and I have very high antibodies.  I see rheum dr who definitely diagnoses SJS and wants to do a skin biopsy when the foot rash comes back.   So now I am seeing an immunologist, rheumonologist,  pulmonologist, and my great gp who started the ball rolling.  Still don't know if the indolent lymphoma is off the table or not - especially since I read that SJS can mutate into that.

I got way over "going nuts" with 2 yrs of emotional H getting bounced from dr to dr.  I am still on an anxiety med that has helped a lot! I finally just had to tell myself the heck with this and I will just deal with stuff when it comes up instead of worrying about it. I talked with a cousin who also helped me put things in perspective.

Soooo I got a name to what I have but just a label and nothing else has really changed except they now know what to monitor me for.

[Rhonda]

My diagnosis was relatively short in coming, but after I knew what I had and started learning about the disease, I realized I have had it for many years.  For as long as I can remember the eye doctors have told me my eyes are dry and they were hesitant to order contact lens for me, but they always did.  About 10 years ago, my blood pressure suddenly jumped out of control and I was extremely tired.  They ordered blood pressure medication and told me I would start feeling better "soon."  I continued taking the blood pressure medicine for about 3 years and then I started having severe shortness of breath and fatigue.  It was all I could do to walk across the room.  I was having palpitations and could feel my heart skipping beats.  My GP ordered a 24 hr holter monitor and confirmed the palpitations and skipped heart beats. So he sent me to a cardiologist who ordered a stress test- which I could not complete because of extreme fatigue and rapid heart rate.  He sent me to a physiologist (cardiologist who specializes in the electrical mechanics of the heart).  This dr actually said that there was  nothing wrong with me and I needed to exercise more.  He said I should lose 5 lbs and that would make me feel a lot better. I was so frustrated I stopped complaining.

Then about 5 years ago I developed a cough that would  not go away.  At first I thought I had allergies and a cough from being confined in a car with a cigarette smoker.  But the cough would not go away.  I went to 4 different doctors- all who said the cough was from my blood pressure medication- and they all changed the medication to something else.  Finally, the 5th dr said I needed to see an ENT because I probably had a stricture in the esophogus.  I did not go there.  My GP suggested I see a gastroenterologist because I probably had reflux...well I did they said- with NO tests- and ordered me Pepcid. 

I continued with the cough all this time and have tried numerous doctors.  They all wanted to do the same tests over again...and change my B/P meds.  I refused.  I gave up on complaining about anything and just went for routine check-ups until.....

This past January I traveled from Florida to northern Illinois for two weeks to stay with my son and daughter-in-law to help with my new grandson.  It was very cold and snowy while I was there and I could hardly walk.  I was miserable- ached from head to toe and was so tired I could hardly hold my eyes open.  The flight there was miserable and the flight home even worse.  I had a scheduled appointment with my doctor in late January and I was so miserable I was crying in her office.  For the first time EVER I had found a doctor who would listen and not think I was a hypochondriac.  She ordered bloodwork and phoned me right away to say I had an auto-immune disease and I needed to see a rheumatologist right away.  The rheumatologist was very understanding and supportive and diagnosed me with SJS and fibromyalgia the first day I was there.  He ordered numerous other blood tests and had me come back in a month. 

So...while my actual diagnosis was over a very short time span, my symptoms have been for years.  I am still going to all of the specialists, trying to take care of one problem at a time.  It has been a very scary experience for me, but I am one of the lucky ones.....I have a very caring, loving, supportive family and I have very knowledgeable, caring and understanding physicians. 

And we all are lucky, because we have each other...and this forum.

God bless.

[DragonflyC]

I'm like Rhonda--short journey from symptoms to diagnosis last spring, but I think I've had SJS for many, many years.  People have commented on my red eyes for as long as I can remember (even in high school), and in college I had to take a few months off from my contacts after being diagnosed w/ pink eye and then later w/ being "allergic" to my contacts when the supposed pink eye didn't clear up.  I'll bet if I'd had a blood test back then, my ANA and SS-A would have been pretty high.

Diagnosis is definitely easier with positive blood tests.  I tested positive for SS-A and ANA back in 2004 when I was first diagnosed w/ Hashimoto's, but didn't get an official SJS diagnosis until last year.  It was really just a matter of eventually having symptoms flare up to match the blood work.

[dbab]

Short version 

Back in 2003 I had a really bad flu/infection that lasted about 2 weeks with fever reaching in the 104's.  I could barely move and even just layed on the floor at times when I felt so week.  During that time, my fever would break only to come back full force again and it seemed that happened daily.  Finally got over that and never was the same.  I started getting "lazy" (at that time, I and others thought that was it).  I was always tired and run down and just hurt very often. 

Well after 3 years of this, I had enough.  I went to my GP and asked for a mono test because I thought possibly I had a long standing mono infection.  He did that test but he also ran a basic rheum workup which included and ANA test and Sed rate which both came up positive so he immediately sent me to a rheumy (oh, and I didn't have mono LOL). 

The first rheumy I saw ran some more tests and when those came back (SSA (antiro) highly positive) said I had Sjogren's and gave me no more info and no meds.  He told me that when I hurt to take Ibuprofen.  I couldn't believe it and thought that there must be more to help me so on a quest for a new rheumatologist. 

My second rheumatologist did a better work up and really examined me and asked me lots of questions (something that my first rheumy didn't do).  He put me on Plaquenil immediately and a RX NSAID when I explained all my symptoms.  He sent me to a ophthalmologist for eye exams for the Plaquenil and a schirmer's test (which came back positive).  He also was suspicious of rashes on my face, arms, and legs and sent me to a dermatologist (diagnosed with subcutaneous lupus erythematosis & malar rash).  I loved my second rheumy but had to change because of insurance changes. 

My rheumy now is great also (she is very sweet), I have a diagnosis of SLE/Sjogren's/Raynauds (just got the Raynauds confirmation today) and am treated with various supplements, Plaquenil, Methotrexate, Lodine XL, and a few other PRN meds.

[Patze]

Wow folks, some of the stories just want to make me cry for all the crap that you went through just to get diagnosed.  But I'm glad that you're here and I get the pleasure of knowing you and being able to share our lives.


Patze

[Tryfan]

Fluffiebunnie, your list seems very familiar to me but I am still very much in noman's land with my diagnosis.

I, too, do not have positive SSA/B but I do have a positive Cardiolipin test which points to Antiphospholipid syndrome/Hughes syndrome and a rheumatologist I have seen lately has mentioned Sjogrens and Lupus (I have a malar rash across my face).  However, you have to wait so long for blood test repeats and appointments with specialists that I think it will be a while before I know exactly what I'm facing.

I've just been through some sort of nasty flare and am still having tingling, hot feet and legs, headache, joint pain, shoulder and neck stiffness, Raynauds etc etc...  When you do not have a diagnosis as such (although autoimmune is certain, just don't know which one is Primary), I don't think there is enough support out there during the waiting time.  There are sites such as this but I am referring to the medical profession.  I never know if I should go to the doctors half the time and like you, I have found myself leaping from someone who didn't like visiting the GP, taking any sort of drug to someone who has seen lots of specialists, had lots of tests and is still not sure where to go for help or if I need it.

I see the Rheumatologist in July so I am hoping that I will get a few answers but I still need further blood tests which won't be done until August.  Aaaagh!  It is so frustrating but I feel like I've had this for many years and a few weeks won't make that much difference. 

Just wanted to say I know how you feel.....hope you make progress soon,

Mary

[fluffiebunnie]

Fluffiebunnie, your list seems very familiar to me but I am still very much in noman's land with my diagnosis.

I, too, do not have positive SSA/B but I do have a positive Cardiolipin test which points to Antiphospholipid syndrome/Hughes syndrome and a rheumatologist I have seen lately has mentioned Sjogrens and Lupus (I have a malar rash across my face).  However, you have to wait so long for blood test repeats and appointments with specialists that I think it will be a while before I know exactly what I'm facing.

I've just been through some sort of nasty flare and am still having tingling, hot feet and legs, headache, joint pain, shoulder and neck stiffness, Raynauds etc etc...  When you do not have a diagnosis as such (although autoimmune is certain, just don't know which one is Primary), I don't think there is enough support out there during the waiting time.  There are sites such as this but I am referring to the medical profession.  I never know if I should go to the doctors half the time and like you, I have found myself leaping from someone who didn't like visiting the GP, taking any sort of drug to someone who has seen lots of specialists, had lots of tests and is still not sure where to go for help or if I need it.

I see the Rheumatologist in July so I am hoping that I will get a few answers but I still need further blood tests which won't be done until August.  Aaaagh!  It is so frustrating but I feel like I've had this for many years and a few weeks won't make that much difference. 

Just wanted to say I know how you feel.....hope you make progress soon,

Mary

Yes we are definately in the same boat!!! I am seeing my Rheumatologsist in early August.  I was due to see a neurologist as an "urgent" appointment at the end of July to get a letter today to tell me they have postponed it for a whole month!!! No reason!!!! It really messes with my head all this.  Now today I wake up with my left eye slightly numb and blinking is not very strong... back to GP in an hour or so as it is accompanied with stabbing pains that all OTC medicines dont touch.  I just want ONE DAY where feeling ill does not fill the whole day. 

I hope anyone in limboland gets treatment and answers soon.. it is so depressing.

[gsmraxe]

Wow, all the crud people had to go through.  I just had skin tingling in my leg.  Felt like my skin was burned but there was nothing  there.  Went to the dr who blood tested me and I tested positive for SSA and a mildly positive ANA

I do have dry eyes, mouth etc., and have for many years, but i don't feel that it's bad enough to go on meds.  

I always wondered why in the world my joints ached so bad after I sat for 30 minutes and stood up.  I was only in my 30s when that started.  I just make sure I move around a bit.

I feel bad for those that are really sick with this...  

[kathyl]

My diagnosis took a long time because I did not know what dry eyes or dry mouth felt like.  So I always denied the symptoms.  I started with neuropathy that just kept getting worse.  At first the dx was MS then I tested positive for ANA (off the charts) and SSB.  So I was sent to Rheum doc then back to Neuro and so on.  Then I went to an Ophthalmologist who said I had dry eyes and that was what that stabbing pain was I was feeling in my eyes and with the positive tests, she said SJS then I went to dentist who said your mouth is dry.  So with that the Rheum made the diagnosis. Then I got pleurisy - that hurts.  Joint pain but the plaquenil helps that.  I have swollen lymph nodes.  Now I have gastroparesis (my stomach does not work and I am having trouble keeping my weight normal).  Plus I have purpura all over my arms.  I bleed if something touches me.  And very bad photosensitivity.  I use an umbrella.  My Rheum says you could call it lupus but I don't have the other positive blood tests that come with lupus so primary SJS is the best diagnosis.  Good luck.  Keep complaining to your doctor.  I have a tendancy to smile and want to please people and I had to learn to complain.
KL