Newbie

[Rose G]

Hi,  I am new here and have read many of the messages.  I have a few symptoms that I don't see from others.  I am considering seeing a Neurologist.  My Rheumy is not very helpful.  Quick visits, in and out.  No blood work for over 2 years.  Shouldn't that be checked?  Just put me on steroids and Plaquenil.  Stopped the steroids early, didn't help, think I got worse.  Still on Plaquenil and will stay, but no relief yet.  I do not have your standard fatigue or joint pain.  I have a lot of stomach issues, GI has run many tests, all normal except for gastritis which I take meds for and slight gastroparisis.  I have no desire to eat and am losing weight like crazy.  I am heavy so have a ways to go before I get too thin.  And I have this very odd weakness/pain in my armpits (no lumps) and my arms, hands, legs and feet feel very weak....no pain, just weak.  I feel like I can't grip or move them, but I can.  My toes feel weird when I walk, almost like they are not there.  Anyone else have this or any idea what it could be or who I should go to....so many drs and not many answers or help!

[Cheryl]

Rose,
  I'm sorry you are having so many symptoms and feel that your doctor isn't helping.   Do you have a gp?  Maybe he/she can advise you or give you a referral to a neurologist.   I can sympathize with the gastro issues, and many members have differing degrees of neuropathy.  You aren't alone!
Wishing you well,
Cheryl

[lynnmarie219]

Hi Rose and welcome to Sjogrens World!

I think going to a neurologist is a good one to start with after you described some of your symptoms....also looking for a new rheumy isn't out of the question either if you are not satisfied with your current one. I don't know how far you live from a major city but looking at University Medical Centers is often a good place to start...even it means driving a bit further. Quality care can be worth it!

As far as labs go...my rheumy checks different labs every 6 months for the most part...but sometimes we wait for year. I guess it depends on your symptoms and concerns as to what gets checked and how often...but thats how I get checked.

Hope the plaquenil helps you out soon....sometimes it can take a little while to work...maybe with a little more time it will do just that!

[Joe S.]

Welcome Rose G. It sounds like you have the typical medical experience that we get from most members of the American Money Association. I hope you find the information that you are looking for. Blood work should be required to monitor the progress if nothing else.

I do not know about your tummy issues. Your toes sound like neuropathy. Are they an odd color? You should go see another doctor or 4 to resolve the the diagnosis.

[Bucky]

Hi Rose - welcome.

I'm sorry you are having so many stomach issues.  I don't know what to recommend, as I don't experience this with my Sjogren's.

But, I do agree, if you don't feel you are getting the answers you need from your current doctor(s), by all means, look for another. 

My Rheumy doesn't order any blood work - I usually ask my GP about a month before my scheduled Rheumy appointment to do a CBC blood work, if I feel it is necessary.

I hope you find this site helpful to you on your Sjogren's journey.  Do you have the dryness issues of the eyes, mouth, nose?

Bucky

[hikerknees]

Hi Rose,
Welcome to the site!  I am new here too and find this whole auto-immunity thing very confusing.  I like the suggestion about a University (ie teaching) hospital, just know you have long waits and you hardly ever see the same doc twice except for the lead person who comes in for 5 minutes at the end.  But the residents are very good, and they are being monitored by some of the best.  Negotiating the medical system is difficult even when we are feeling well, it has gotten so big and complicated.  I try to never go to an appointment alone (I am always amazed at how much I miss!), and I always prepare ahead of time--I actually write out lists of my meds and my symptoms, even a chronology of tests and results can be helpful given how long and drawn out this has been for most of the people I am reading about, me included.
As for symptoms, the numbness is often listed as a symptom of SjS, although I am not clear on why yet.  It is weird, isn't it?  I find it throws my balance off (embarrassing since I teach balance exercises to young kids).  I have had GI problems since I was young, tons of doctors visits and tests, different diets and meds until the diagnosis of GERD.  My rheumy isn't sure it is due to Sjogren's and since I have elevated levels for Scleroderma he thinks it may be that.  I think it is stress (I work in schools and it is always better in the summer, go figure).  Do you have a good relationship with your gp?  Often they can help you negotiate where to go for help with these tricky symptoms, and it is much easier to have them monitor the blood work; like if you have a positive ANA they can help you watch it on an annual basis, or whatever is recommended.
Also, you mentioned you quit the steroids, I hope you talked to the doc before you did that.  I think a lot of docs don't have enough time to establish relationships with us, then when we quit a med or can't follow their advice about diet or whatever, they throw their hands up.  The plaquenil was too much for my stomach until I cut the dose, but I left my guy a message.
I send you healing thoughts

[Scottietottie]

Hi Rose 

Just wanted to add my welcome!

From your symptoms it sounds like a neurologist would be useful.

Take care - Scottie 

[Rose G]

Thanks for your replies and welcome wishes.  I do also have very dry mouth, nose and eyes.  Use eye drops, ointment at night and Biotene products for mouth.  Use saline nasal drops.  The GI issues and the weakness in the hands and feet are the hardest issues to deal with.  I do like my GP but she is manly good for sinus infections, etc.  Anything with SS she says I have to go to my Rheumy.  There is only one Rheumy in my town and he is mean, even my GP said so.  I go one town over now.  I am about 40 minutes from Philadelphia and they even have a Sjogren Center....but like it has been said, very crowded and my Rheumy says the head guy there was her mentor and she made it sound like he wouldn't do anything different but I could certainly go there if I wanted to.  I don't.  MY Rheumy also said that since SS affects all different body parts, you need to go to each specialist and treat what they find by them.  So frustrating.  Right now I have no appetite, pain in my stomach and just can't and don't eat.  Have lost about 36 lbs now, but could afford to. Eventually though if this keeps up it will be bad.  MY GI did EGD, stool test and pancreatic and other blood work.  Only thing found was gastritis, which I now take 3 pills for but no relief.  Tomorrow I am going to call my GP and Rheumy to get neuro referral and take it from there. I also have the sounds in my ears that some have talked about.  I know people thought I was nuts about this, but to read other people saying the same thing was so good!  It sounds like summer with the windows open, like crickets and cicadas.  ENT just said it was from slight hearing loss, but nothing about anything I could do about it.  Also, even though my neck and face ache and feel swollen, he said they weren't.  That the pain is from the inflamation cause by the SS.  I just want to find something that can be fixed or at least managed so I can have a semi-normal life...at least be able to have some happiness/fun.  Only thing I really take for the SS intself if Plaqunel and Lyrica (which I don't thnk I need and does nothing)

[Pisces24]

I am very surprised no bloodwork was done. I would think the doctor would do that just to monitor what is going on. Gosh even way back when I was a lot healthier I gave a tube or two at my yearly physical.
I would DEFINITELY think about getting another doctor - at least one that is going to monitor you.

I go to a teaching/research hospital now for all my -ologists. The first time I saw my immunologist he ordered 14 tubes of blood taken for tests.  And no that is not a record and I didn't even get orange juice or a cookie. LOL.  He did call me with the results and said it was definitely Sjogrens and I tested very high for it. I really didn't know how high until I got the numbers which were about off the charts!  Makes me mad the other "so called specialists" didn't see that.
I have 3 -ologists I see so it breaks out to one every four months - except this year I actually get to see two in one day! They all consult each other, interact and not test result delays or g o d complexes.

Sorry but it sounds like your doctors are just doing the absolute minimum amout of work they have to do. Sounds like they don't want to be bothered with really getting in there and finding out the causes of your problems. If you don't fit the textbook, they don't want to bother with you but they don't TELL you that so they just do what yours are doing.  Believe me, we have ALL been through that with doctors.

Hope you find one that will get in there and work for you and with you!. I would recommend a teaching / research hospital if you have one in the area as that works best for me. Good Luck!

[lynnmarie219]

I go to the University of Chicago and I always get to see the actually docs with my rheumy, neuro, gastro, and urologist.....there are times that i also see the fellows or other ranks of medical students...but the doc alwasys visits with me as well....and as far as waiting...it's usually not a long wait at all to get in to the office once I am there.

Thas't my experience...but Im sure that its different at each place.

Good luck to you in getting in to see some good docs that you need to help you out!   

[newhorizons]

Rose, A special welcome to you!!

[Meld256]

Hi Rose,

Just want to welcome you to Sjogren's World, also!    I think you'll find lots of great information here and many friendly, supportive people.

Sounds as if an appt. with a different rhuemy might be in order. Mine insists on blood work every visit if it's been over 3 mths. since the last time I was there. This is just my opinion, but I don't feel most of us need a specialist for EVERY body part we're having issues with. Unless there are severe problems.  I feel my GP can take care of everything else for me; I have an opthamologist and a dentist otherwise.

I have some of the weakness, too, but not sure if it's the same as yours. My upper arms are weak when I awake and sometimes I get a wobbly-leg thing where my knees don't feel strong. A neurologist might be the next appt. for you just to sort some things out or to rule out any other problems.
I hope you have some luck in finding a doc or two who will do more to try to help you! Please keep us posted. We are all here rooting for ya. 

Take care,
Melinda