What are the symptoms of Sjogren's induced RTA?

[Woolygimp]

I'm still at Mayo and while I expected to come up here and have them run all the tests, I'm having to sort of advocate for myself and tell them where to look.  Made a good bit of progress and had a couple issues taken care of already:)...but there's still something unresolved.  Over the 8 months or so I've had these "episodes":

I'll become super, super weak as in having difficulty walking, breathing, picking up my arms weak.  I've had a few ER visits over it.  There are some other symptoms, especially feeling really out of it mentally... but several hours later I'll improve.   It's definitely not normal and I want to find out what's causing it while I'm up here.   It's scary too because it's affecting my breathing.  I don't know if I'm breathing rapidly or if the weakness is affecting my lungs... but something is definitely not right.  My lungs and heart are functionally perfect, I was cleared by a pulmonologist and they're healthy.

There are two disorders that stand out to me that I think could be to blame, both related to SJS:

Distal Renal Tubular Acidosis

or

Polymyositis. 

I've done a lot of research into metabolic acidosis and I have a TON of the symptoms but I can't find anything showing the symptoms for dRTA.  For those of you diagnosed, was it easy to get tested and what were the symptoms that you experienced?   I really don't think it's polymyositis because of how evanescent this crap is.  I'll feel so weak I can barely speak one morning, and by the afternoon feel like running.

This weekend we had planned on leaving and I was satisfied with my visit, had quite a few things resolved: ), but I had another one of these episodes today.  So I'm going to be here another week or two, I can't leave without finding out what the heck is going on.

So frustrated, some days I feel great and other days I feel like there's a hundred things wrong with me.  I know there's something else going on... and both of these things could explain the tachycardia, arrythmias, chest pains, shortness of breath that I've been experiencing - they haven't been able to find a cause for any of it yet, but both the arrythmias and tachycardia were documented in my file and seen on the tests.   My heart/lungs are the first things that were checked and they're both A-Ok!  So it's something somewhere else... either in the muscles or electrolytes disturbances. 

Anyway, just trying to get all of the answers before I leave.

[Sorry, I know I should post this in my other thread - I just wanted to get a quick update and see what symptoms the people here experienced because there's almost no information on this anywhere.]

[irish]

Have you had them check you for myasthenia gravis??? The tests are the acetylcholine level and the antistriated muscle antibodies which is a more specific breakdown of the acetylcholine level.

This sounds a lot like MG. Weakness and trouble breathing is a main symptom. Also, drooping of eyelids (my last symptom to show up) swallowing food up into nose. Also, people with this also can't blow up balloons.

This disease can show up at different times and in different ways for people. The breathing issues can be very serious as one can end up in crisis (inability to breath due to paralysis of diaphram) and be on vent for a while. Most crisis need 2-4 weeks of hospitalization which includes plasmaphoresis. This needs to be checked out.

I would check with nephrologist for the RTA. The potassium and sodium are usually low with this. Many people can control this fairly well with supplements. Needs to be monitored by a specialist. Polymyositis doesn't usually involve the breathing. Good luck. Irish

[Madison Granny]

I have dRTA and I did not experience any symptoms.  I had a routine blood test that showed that my potassium was low.  My GP kept giving my potassium and retesting but the levels would go up and down.  You kidneys return too much acid back to the body instead of putting it into your urine.  This causes your kidneys to lose too much potassium and keep in too much calcium resulting in the formation of kidney stones.  I finally got tired of taking potassium and went to an internist who took a lot of blood and a 24 hour urine test and found the reason for this.  The she did a simple urinalysis to confirm my CO level.  She told me I had dRTA.  I control it with sodium bicarb.  I haven't notice the symptoms that you are describing.  I felt fine.

[Woolygimp]

Yeah, I guess that's just me being hopeful.  I really hope I don't have an inflammatory muscle disease...

I don't know if it's just me but I have such a hard time telling the difference between fatigue and weakness.  If you're fatigued, your muscles don't have the energy to move, right?  So fatigue causes weakness?   If you're weak, it takes a lot of energy to do a lot of things you normally have no problem doing and that will cause fatigue.  So they are almost interchangeable.

I really can't tell whether I'm just so fatigued that I'm weak... or if I'm so weak that I'm fatigued.  I have none of the eye symptoms of MG.  The weakness is all in my arms and I really think my lungs, some in my legs.  This could be what's causing my racing heart too. 

[anita]

What was Mayo's assessment of the fatigue and/or weakness? 

[Woolygimp]

What was Mayo's assessment of the fatigue and/or weakness?

Haven't gotten to that part yet.  Having to circumvent rheumatology just to have my CT and salivary lip biopsy done ended up wasting like two weeks... so now that that's out of the way and I have those two positive results and that I do have an autoimmune disease we can move on to what's really bothering me.

It's odd though, I was feeling SO much better when I came up here.  This last weekend, I had a really bad flare like I was getting back home and I'm glad I got it but I need to find out what's doing this.   I feel SO bad some days.

So hopefully I get some more testing done and I get to the bottom of it.  I mean the dry mouth and crap has been going on for years but there's definitely something else that started happening in the last year or so that has made me feel really, really bad and sort of scared and that's why we came up here.

It's odd though, the diet really does work.  Everytime that I loosen up my diet, start eating out, start eating dairy again, start reintroducing foods... I end up going through this crap.

I feel really bad about making these posts over and over... I know I'm repeating a few things.  My memory is definitely not what it used to be.    The good days I have, and I have some days where I feel SO fantastic... even my thinking completely clears up, but they make me forget about the bad ones.