I'm really worried.

[Woolygimp]

I've been sort of scared over the last couple of months because I'm dealing with a lot of new things that I've never experienced before.  I'm 25 and I've been living with this crap, because that's what it is, for about eight or nine years and only recently have things really begun to scare me.

I have a bunch of new symptoms that are intermittent and seemingly random: shortness of breath when I'm not doing anything, just sitting there it's like I'm not getting enough air.  Like I ran up a flight of stairs, but I didn't... it just comes on while I'm moping about, but it's not that I'm panting just that my body feels like it needs more oxygen.  Permeating fatigue that I've never felt before - almost like being a zombie and not even having the energy to talk, then a  few hours later I'll feel fine...  It comes and goes.  Weakness and myalgia in all of my muscles.  It just hurts SO bad and I feel so drained.  Cognition goes out the window.  I woke up this morning and it hurt when I breathed in and out laying down, then it stopped, then I started having chest pains at random areas.  There's a very small amount of pain around my left lung/heart in that area that is kind of consistent, it's not really pain as much as a dull abnormal sensation.

And I've been losing lots of weight, even while on low dose prednisone.  I'm a 25 year old guy and I'm down to 145lbs.  I just have no desire to eat anymore, food makes me feel horrible.  I felt this way a couple months ago and went to Methodist, they put me on an I.V. and I felt better, but they never pinpointed what was happening even though they ran an endoscopy to make sure Celiac damage had healed (and it had) and an MRI/CAT scan (which was normal) and released me after I felt better.  I felt better for a couple of months and then I'm starting to feel bad again.

I have a rheumatologist that is on drugs, I don't know a better way to say it.  I don't have any confidence in the man and the last time I saw him he was sweating, incoherent, and basically all over the place - he was going through withdrawals of some sort of medication, I think.  He is trying to pass me off to Mayo clinic which is on March 1, an entire 4 weeks away.  I also have an option to see a new rheumatologist on the 30th and I have a GP who is awesome but my case is so beyond him that he just doesn't know what to do.  He says go to the hospital, but every visit has been non-productive... none have checked my heart/lungs other than a CAT scan.

Hospitals around here don't really know how to deal with chronically ill patients, Methodist did a a pretty good job considering they don't have a rheumatologist on staff, did a lot of blood work and ran a few CAT and MRIs all of which were normal.  I had some really weird blood results though that they didn't really pursue.  I really don't know if I should go back though, it depends if I can make it the 4 weeks to Mayo.

This is an incredible stress on my family and friends who are with me the entire way but it's really taking it's toll.  I feel incredibly goofy if I go into an emergency room with these complaints, tell them I have Celiac disease w/ sicca symptoms they tell me that they're suited as a crisis center and chronically ill patients should be seeing a doctor through outpatient.   I KNOW something else is going on though, I have never felt like this in the last nine years.  I felt like shoot but I didn't feel like my body was failing me.

I have pretty crappy insurance, huge deductable and I'm still liable for 50% over that amount, so going to Houston again and then Mayo a few weeks afterwards will take it's toll, I just have never been here before and I don't know what to do.  Should I go back and find out what's going on?

Not trying to be a drama queen and I know you guys have your own set of problems but I just want to defer to your experience, what should I do in this situation?   I had an appointment at Mayo that I passed over, on Christmas Eve, for this March 1st appointment, so I could spend the holidays with the family, and I regret it so, so much.  I was feeling good at the time.

The problem is the symptoms come and go and I haven't been able to identify a cause other than I feel better the faster my heart is beating and the more active/awake I am.  I would feel stupid sitting in an emergency room feeling perfectly fine and having tests come back normal.  I think it's probably more likely something involving my heart and lungs, or maybe even thyroid, than something like cancer but I just don't know the urgency of things like this.  Technically it could just be some new manifestation of the Sjogren's or it could be something like fibromyalgia (it's why I made my last post). 

I know I haven't been the most supportive poster, there are so many great people on these forums and I hardly reply to other threads, and I apologize... but I really could use some advice. 

[Woolygimp]

Family is supportive and will take me to Methodist anytime I feel the need.
Do I feel like I can tough it out till Mayo on March 1st, yeah... but I want to know what is going on.  I don't want them to waste god knows how much more money if this turns out to just be fibro. 

They're definitely worsened when I eat or drink too.

Oh yeah and the soonest I can get in to see a pulmonologist?  2 and a half months.

5k char limit.

[Sooki]

Breathing problems and chest pains are really scary.  And losing more weight can be very dangerous.  It seems to me that you may need to see someone before March 1. I know the hospital can be a crapshoot, especially if your symptoms are intermittent. But if you haven't been there since your new symptoms, it would be worth a try.  Sometimes emergency room docs can rattle the cages of doctors with waiting lists.

Two things come to mind to do now - first of all, make sure you're on the cancellation list at Mayo.  Tell them about your new worrisome symptoms and tell them how long it would take you to get there and you'll take any appt you can get to. 

And secondly, keep a food diary.  If you're celiac and glutenfree and still losing weight, there may some other food intolerances causing malabsorption (dairy, eggs, soy, corn are often bad actors).

I'm glad your family is supportive.  Take them up on their generous offers when you need them.  Take care.

[irish]

woolygimp, I am truly sorry that you are having such a rough time of it. I know that you have posted a lot of info so excuse me if I ask things that I should know.

First of all, have you had your thyroid checked lately? This can be cause for weight loss and other symptoms. Weakness can also come with thyroid problems.

Poor appetite can also happen with autoimmune disease and weakness is the core of so many autoimmune diseases. However, I am wondering if you have had any tests to check out neurological problems. Myasthenia gravis is an autoimmune disease that can cause muscle weakness and breathing problems. Some docs do the muscle tests for weakness, EMG, but I never had that done. My doc used my symptoms along with the blood test antistriated muscle antibodies to diagnose my myasthenia.

Unfortunately doctors are not immune to the drug craze that is all over this nation. I would think that getting yourself a new rheumy should be top priority. You are really "stuck" until you get a new rheumy who hopefully will send you off to a pulmonologist, neurologist and cardiologist. I just hate to say all this cause I know the whole drill about seeing all the ologists. I thought I would die prior to getting diagnosed cause I saw so many doctors that I could have screamed.

I guess I would also encourage you to try and find an immunologist to help with all your conditions. Many of them take care of patients with autoimmune diseases and are darned good at it. Since sjogrens can affect the lungs and the heart you sure need to have assessments done in these areas. Also, I don't know if you have ever used an antidepressant, but if you haven't you may want to talk to a doc about it.

People with sjogrens are very high risk for anxiety and depression and generally need antidepressants. The antidepressants can help calm pain as well as help with weight loss issues that are caused from the imbalance of chemicals in the brain. There are many articles out there about depression in the autoimmune and sjogrens patients are at higher risk than lupus patients according to many articles.

I wish you well and hope that you can get the help you need. As far as going early to Mayo Clinic be aware that unless you can rearrange your appointments you will have to get in line. I live fairly close to Rochester and took my nurses training there many years ago and also did some doctoring there off and on.

When people come without an appointment they check in at a desk and then they sit and wait until the office can work them in.This could be the same day, or it could be a several days wait. If you have any questions about Mayo Clinic you can PM me. I have spent a lot of time there over the years. Good luck. Irish

[Joe S.]

Here is a link that shows the trigger points at the bottom of the page:
http://www.webmd.com/fibromyalgia/guide/fibromyalgia-tender-points-trigger-points?page=2

If it is fibro you have a good chance of remission after 5 years. That is usually when your management skills kick in. I was able to go back to work full time for about 8 years. It may have been longer but the job was moved to India. Fibro is manageable.

If you are coming to MN, let me know.

[warmwaters]

The combo of weight loss and celiac prompted another idea to suggest to whichever doctor you end up seeing.

My husband lost about 30 lbs (down to 115) and was feeling miserable all the time.  It turns out he had severe anemia (which they often don't test for in men), and further testing determined that celiac disease was the underlying cause of the anemia.

Just a possibility, but if the test hasn't been done, worth doing.

[Meld256]

Woolygimp,

I, too, am sorry to hear you're having so many issues right now. I know new problems can be frightening, especially when we don't know the cause.

You've received some good advice already.  Did you say you have the chance to see a new rheumy on the 30th of this month?  I would suggest you may want to give them a chance while you're waiting for the Mayo Clinic.  It really sounds like a change is in order from your present one, and Mar. 1 is a long time to wait when you feel so awful.

Don't worry about seeming like a drama queen.  We all need some encouragement and support here sometimes so much we just need to reach out and tell it all. That's why we're here...to help one another.

Take care and keep us posted. I hope you have some relief soon.
Melinda

[mshistory]

Woolygimp, are you the poster that is from SW Louisiana? Instead of driving to Houston, if you're willing to make a shorter drive east, I can recommend my rheumatologist - he is AWESOME. My first appointment with him, he spent over an hour with me, listened to every symptom I had (I had written them all down so I wouldn't forget anything) and was extremely thorough. I love him  He moved outside the city, and now I make the drive to see him even though it means getting stuck in horrible traffic on the way home.

I also didn't have a long wait to get in to see a pulmonoloigst, and I like mine. Also very thorough and knowledgable.

The sudden shortness of breath and chest pain - I've had those symptoms. Mine are caused by asthma and the chest pain turned out to be pleurisy (treated with NSAIDs but that got really hard on my stomach - I'm not sure what was worse, the pain from the pleurisy or the stomach pain the Aleve caused).

[jazzlover]

Very sorry to hear!! I hope you find some answers very soon. Everyone has very good suggestions. I'd like to add one little thing. Since you are on prednisone, you could be having some issues with candida/yeast as well. (NOT your main problem, I'm sure) So feeling weird after you eat could be an indication of that. Candida can also raise your heart rate.

Make sure they check you for lymphoma and yes.. anemia. Good advice there!

[MissyLouWho?]

I was going to suggest what mshistory did~ asthma for the breathing.  I have asthma that developed the same time as most of the other symptoms (2 years ago), and I was diagnosed with asthma even though I don't wheeze.  The breathing test I did showed it.  Advair works wonders for me.  Even took away the intense joint and muscle pain/fatigue and regulated my heartbeat for about a year and a half (then it all came back in November, but they say my asthma is in check, so it could  be related to the sjogrens) but my point is that if it IS asthma, the advair may offer you relief, even if temporary.  Before the advair, I had the same symptoms in my chest/lungs as you are describing.  An it is exhausting to try to breathe when I have a flare.

And don't worry about just lurking and not posting much.  Some people aren't big talkers, and some (like my motor mouth self) can't seem to shut up!    Don't forget that what you post about yourself helps others too  . 

[Woolygimp]

Thanks so much for the responses. !!!!

First of all, have you had your thyroid checked lately? This can be cause for weight loss and other symptoms. Weakness can also come with thyroid problems.

My temperatures are good, usually around 98ish.  Doctor said my thyroid levels were pretty normal.   I do feel better when I'm warm though and I have a mother and two sisters with thyroid disease.

Myasthenia gravis is an autoimmune disease that can cause muscle weakness and breathing problems. Some docs do the muscle tests for weakness, EMG, but I never had that done.

This is what I thought at first.  My first time I went to Methodist, I was SO weak that I could barely pick up my arms.  The whole way there I felt so incredibly weak, kind of like how I'm starting to feel again. I started feeling better when they put me on an IV. A few days later I had no weakness and felt normal.  MRI was normal.  It's really weird how the weakness is very intermittent.  It went away completely for a few months, and it'll be there really bad and a few hours later I'll start feeling better.

Unfortunately doctors are not immune to the drug craze that is all over this nation. I would think that getting yourself a new rheumy should be top priority.

Made worse by the fact that I live in a medical black hole, there aren't many good doctors where I live.  Btw thanks a bunch to whoever told me about the Louisiana rheumatologist, I may give that a go if it doesn't work out with the one I'm going to see in Houston.

People with sjogrens are very high risk for anxiety and depression and generally need antidepressants. The antidepressants can help calm pain as well as help with weight loss issues that are caused from the imbalance of chemicals in the brain.

Depression is something I just started dealing with.  My entire life I've had an upbeat outlook on things even with everything I've gone through, and now that's starting to turn.  I really want to avoid taking any medications for that kind of thing though if I can.  I think I'm just a little sad because of how things have been lately.

When people come without an appointment they check in at a desk and then they sit and wait until the office can work them in.This could be the same day, or it could be a several days wait. If you have any questions about Mayo Clinic you can PM me. I have spent a lot of time there over the years. Good luck. Irish

Thanks for the advice.  So if worst comes to worst we can still fly up there and sit around for a few days?   I think this would be a better idea than going to Methodist again and I'm going to try and tough it out till my appointment in Houston, it's only four days away.

The combo of weight loss and celiac prompted another idea to suggest to whichever doctor you end up seeing.

My husband lost about 30 lbs (down to 115) and was feeling miserable all the time.  It turns out he had severe anemia (which they often don't test for in men), and further testing determined that celiac disease was the underlying cause of the anemia.

Just a possibility, but if the test hasn't been done, worth doing.

I have diagnosed Celiac disease.  I'm REALLY good with my diet but... I got glutened two weeks ago by some baked beans that were "supposedly gluten free".  They weren't - other celiacs suspected cross contamination issues and I tested them and they came up positive.   

I'm looking over my bloodwork and I've had mild protein levels in the urine, I think +1, and then on my last set of labs it worsened to +3.  My anion gap levels were slightly elevated both times they were taken too but I'm not diabetic.

Sorry I'm trying to rack my mind as to what could be causing this, playing a guessing game because I don't have much else to go on.  I'll let everyone know how my appt on the 30th turns out. 

The Anion Gap is increased when there are excessive anions/acids in the blood. This is either from too much acid production or insufficient removal of acids (either through the lungs, stomach, or kidneys). Excess acids lead to a rapid respiratory rate (the body wants to blow off the extra CO2), an inability to hold your breath (the acid build up forces you to exhale), low blood pressure, fatigue, poor appetite, etc.

Anyone know what could cause this level to be elevated?  Is it worrisome?  My level was at 16 and then 18 with a reference range up to 15.  They didn't say anything to me about possible causes. I might try to see a nephrologist just to get that checked out.

[Ripvanann]

Hi woolygimp: I haven't had the breathing issues you're taking about, but I do get a racing heart. My blood pressure fluctuates dramatically as well. A few doctors told me that the prednisone can cause this. I don't know about you, but my doctors act as though prednisone is demonic. To me it's the equivalent of telling a doctor you smoke: i.e. every unexplained symptom you have is caused by your filthy habit. In my case, the unexplained symptoms are blamed on the prednisone, so who knows??

I have a QSART/tilt table test scheduled for next week. When I looked into what exactly the test looks for, it encompassed all of your symptoms! This is all blamed on nerve dysfunction. I too, am waiting for an appointment (still waiting to hear back from them re: my application for an appt.). with Mayo and the "Should I wait?" Thing, is maddening.

I also greatly sympathize with you re: the E.R. The night shift and I are practically friends. When they tell you that this is autoimmune related, does it really matter? In other words, when I went in for paralysis on the right side of my face, I was a twit, because it's "obviously" autoimmune related. Really? How was I to know the difference between that and a stroke?!? How are you to know the difference between what you have going on and a heart attack?!? I found that I need to go in to all of my doctors and E.R. visits, on the offense, if you will. Basically, if I get so much as an inkling of that condescending "Um, you have autoimmune issues, not emergency issues." ...crap, I don't even let them complete their sentence before I say "Yeah, because everyone knows that autoimmune issues are always benign, right?" They change their tune then.

You're in a tough spot. I'm praying for you. Peace and blessings to you.
~ Andrea

[Woolygimp]

Thank you and I can relate to everything you said.  It doesn't help that I'm young and I look healthy even though that's certainly not how I feel.

Emergency room doctors really need something to go with though and it's so hard for them to really do much on vague generalized complaints.  They'd rather deal with a gunshot wound or something... and I don't  blame them.  Even if I didn't tell them I had an autoimmune disease, and I told them about difficulty breathing they'd probably chalk it up to anxiety because of my age.

I was reading:

Symptoms of metabolic acidosis are not specific. The respiratory center in the brainstem is stimulated, and hyperventilation develops in an effort to compensate for the acidosis. As a result, patients may report varying degrees of dyspnea. Patients may also report chest pain, palpitations, headache, confusion, generalized weakness, and bone pain. Patients, especially children, also may present with nausea, vomiting, and decreased appetite.

The clinical history in metabolic acidosis is helpful in establishing the etiology when symptoms relate to the underlying disorder. The age of onset and a family history of acidosis may point to inherited disorders, which usually start during childhood. Important points in the history include the following:

This happens with RTA, a normally benign condition associated with SJS assuming it's treated, and I think there is possibly SOMETHING going on with my kidneys.  +3 proteinuria is pretty big and means acidosis and that's what my protein/urine levels were at when I rushed myself to Methodist.  This could be the same thing happening again.


That little block of text is exactly what I feel like so I think it's one avenue worth exploring.  The weird things about the chest pains is they are ALL over the place.  It's not one spot in particular, it hops around.  And I can't tell if the shortness of breath is really shortness of breath or a desire to breath quickly... It feels like I'm breathing in and out quickly with very short breathes...  Kind of like panting, but not nearly that bad.  I'm having a hard time taking deep breathes.  Supposedly it's worsened by diarrhea, which I've had for two weeks straight. 

Is there anyone on these forums with experience with RTA or SJS kidney manifestations? 
Is there a cheap way to get tested for this?  You think an urgent care center could run a urine PH, I wouldn't mind paying a little bit out of pocket to rule this out. and maybe get a routine urine draw tomorrow  What about a GP, could he run this?

OFC, this is more of just the guessing game but it's something that could fit.

[jazzlover]

Mitochondrial disease?? I don't know anything about it but know it causes fatigue.

++++++++++

woolly said,

"I got glutened two weeks ago by some baked beans that were "supposedly gluten free".  They weren't - other celiacs suspected cross contamination issues and I tested them and they came up positive."

Do you mind  sharing WHICH brand of beans?? Also, how do you test for the gluten in the food?? Kinda sounds like the gluten could be the reason for your current state??

[Woolygimp]

Van Camp's baked beans were the brand that got me.  You can get E-Z Gluten test strips that test down to 10ppm... there are a few other validated manufacturers.

My reaction to gluten is very specific, I've had Celiac disease for quite a long time and have been on a gluten free diet for 4-5 years.  It sucks when glutened, that's for sure... but I know what it feels like.  I get a flare in my dryness symptoms including dry eyes, muscle pain that lasts a few days, fatigue, confusion, diarrhea, etc. 

I test things that are new in my diet whenever I have a reaction and usually find the culprit.  I've found gluten in quite a few "gluten" free foods.  Amy's for instance is notorious in the gluten free community for being contaminated.  Rice Dream another labeled product uses barley in it's manufacturer and has gotten me. 

If you really want to avoid getting glutened the best community is glutenzap.com.  They've tested thousands of commercial products including cosmetics and things like shampoo.  There are a good amount of positives that you wouldn't suspect, mostly from manufacturers who do not produce their products in a dedicated gluten free facility so there's CC.

The Van Camp's were definitely negative though.  There was also a thread or two on celiac.com from other people who said they got glutened by the beans, they're supposedly gluten free though.