My Quest for a Diagnosis

[forest]

I am off to see the internist today! I know most people get referred to a rheumy or ophthalmologist, but I am excited because I finally made it from the GP's office to a specialist after 10 years of complaining. I do like that my GP wanted to send me to someone who will look at the whole picture and not just a narrow field of disease. The appointment is an hour long, so I am confident that I can accomplish more than I do at the 5 minute meetings with my GP. 

I am a bit anxious since I know that I will have to wait once again for test results, and if I am lucky (or unlucky) enough to have a positive result then I probably will  have to wait for a rheumy appointment. I am trying to remain hopeful that I will at least get something to ease the fatigue and pain, as I am not sure how much more I can deteriorate and still make it to work each day.

Friday I saw my GP about my concentration problems, and he is ready to treat me with some ADD meds pending the outcome of my internist appointment. I am not sure if it will help with Sjogren's brain fog symptoms or not. My symptoms are piling on top of each other so if I can get relief from just one of my symptoms this week I will have made some progress and it would help me a lot. I am typically not one to take any medication unless it is absolutely required, but I am starting to realize that this isn't going away anytime soon and ready to try just about anything.

I have a backup plan which includes a dye test at the optometrist on Thursday that I hope can provide some additional proof of my dry eyes in support of Sjogren's. I may get a referral from there too if the results aren't good, but so far my eyes have not been too much of a problem.

Anyways, I know this is a common thread for new members to Sjogren's World so sorry for the duplication... I needed to release some anxiety without transferring it to my wife. 

Wish me luck!

forest

[Victoria05202000]

Forest, I hope you get the answers you are looking for.  "Waiting" for lab results are the worst!!!  I wish you luck and hope the internist listens to you and all your symptoms.  It is interesting to know that you GP is thinking of putting you on ADD meds....has anyone else been put on this because of brain fog associated with Sjogrens?

Take Care!
Vicky

[lesmom]

Best of luck, Forest! Keep us posted!
Leslie

[jas1223]

good luck i also have an appointment with an internist this week to move forward trying to get dx

james

[Katybarstool]

Hi Forest and James

Good luck with your appointments. Iwill be thinking about you both.

Kathyx

[KJ]

Hi Forest,

What kind of health insurance do you have?  Sounds like it could be tricare. I hope you get help soon.

I have been on Adderall for almost a year (I think I should have been on them my entire life though!)  It helps me a lot.  On those achy, fatigue days I guess it gives me the illusion of energy.  I don't know about the brain fog as I don't think I have experienced that.  I don't know if this is good or bad, because I have read that you need to listen to you body and follow it's orders to rest when you need it.  Taking add meds will make you want to be doing something.

I will be asking the experts about all this when/if the time comes (I'm still waiting on my biopsy results).

Good Luck,
Kellie

[Scottietottie]

Hi Forest 

Good luck with the appointment. Waiting for results is always a stressful time but this does sound as though you're making progress. You are right too - its important to get the symptoms treated whether they have an official label or not!

Take care - Scottie 

[forest]

Thanks for the support everyone! My appointment with the internist went fairly well... about as good as can be expected for my first visit. I was told that my salivary glands were a bit swollen, which is consistent with findings of the past couple of doctors I have seen. The internist ordered a bunch of blood-work which includes RF, ANA and ENA tests. I have to get the blood tests done in the morning, so I am going first thing tomorrow. Does anyone know the lab turn-around time for ANA tests?

I get the feeling that I may have some difficulty getting a Sjogren's diagnosis if these tests come back negative. I was given an Rx for Venlafaxine to see if that improves some of my symptoms... does anyone have any success stories with this med? I am going to see if it helps before I go the ADD med route.

I have another internist appointment in six weeks, but they will call me earlier if any of the tests are out of the normal reference range. It will be like sitting on pins and needles waiting for the ANA results! I'll keep you posted!

Take Care

forest

[forest]

James: Good luck with your internist appointment too!

Kellie: I understand the illusion of energy bit. I would settle for that now.    I am in Canada, so most of our doctor visits are paid by our provincial health plan, and my meds are covered by my group insurance through work. In the end we pay for it in our taxes though. 

forest

[forest]

Thursday night I had my optometrist appointment. My eyes are not my main symptoms, and I am thankful that they appeared to be in good shape. I had a Shirmer's test done, and my eyes are dry but the result was a 10 where 15 is normal. The dye test showed no dry spots which suggested a pathological problem, so my tear production is apparently adequate. I guess I should be happy.

The anti-depressants that I have been taking for the past few days take about a month to work. So far all they are doing is making me sweat, upsetting my stomach and making me depressed (mildly) during the times of day when I used to feel good. I am hoping these side effects are only temporary as my levels adjust.

I am still waiting to hear back about the blood work checking for antibodies. The longer times goes on, the less chance that I had a positive result since the doctor only calls if something is wrong. I am not quite sure how they are going to explain the swollen parotid glands and fatigue if the tests come back negative though. Hard to blame swollen glands on sleep disturbances I think.

Thanks for listening...

forest

[jas1223]

hey forrest i just met with my internest today
he also did alot of blood work and spent a great deal of time going over my symptoms
he told me that since i have thryoid antibodies it may mask the other results
but he is going to treat me for the symptoms even with out the absolute dx as he said it may take
years for that to show up in my blood work

the ana test should only take a day or two at the most

i hope you find your internest as helpful as i have found mine to be

good luck

james

[forest]

Thanks James! I am glad things went good at your appointment as well. It is hard to say if the doctor has my results or not, so all I can do at the moment is sit and wait and I am very impatient. I found my internist very helpful, and she paid close attention to my symptoms. She did suspect Sjogren's as well, but I guess after suffering for so long I am not very confident that I will get a diagnosis. There is a bright side though, I do have another appointment in six weeks to meet with her again and I guess we can start over then if necessary.

Take Care
Scott

[irish]

forest, If after a period of time(you will know in your gut how long to put up with it) with the issues with the antidepressant you may need to call your doc and tell him this med isn't doing the job. Every antidepressant affects a different combination of chemicals in the brain andit often takes trials of meds til your find the right one. Don't lose hope, just be patient. When your mood is better and you get a better nights sleep you are more able to cope with the health issues. Irish

[forest]

Thanks Irish.

According to the list of side-effects it is normal for depression to get worse for the first week or so, and it is only mild. I am on a low dose right now, and will increase it next week to the typical dosage. Apparently I should feel better in the after the first two or three weeks if it is going to work for me. This anti-depressant is being investigated/tested for use as an ADD med as well, so hopefully when I get out of this rough spot, I can solve two problems for the price of one.

The appointment that James had recently sounds very similar to mine, except my doc said she would look to a sleep disturbance or depression for an answer to my problem. My recent sleep test was negative for sleep disorders, and I have already started the anti-depression meds. It think that was her way of saying that if they came back negative, then she doesn't have an answer. 

[forest]

This isn't a very interesting post, but I thought I would post some good news for a change. I appear to have made it through the rough side effects caused by starting my new medication. I actually feel pretty good to day and was able to get some errands done. I was even able to get some deals during the Mother's day sales. Sure is a big change from yesterday where I could do absolutely nothing, and hopefully I won't have to go through side effects again this week as I increase my dose on Wednesday.

Take Care everyone... and thanks to those who supported me through the past week.

forest