Hi all,
I need some input on recent issues. Since beginning of April, I have been suffering extreme muscle weakness in my arms and legs. Plus some weird tingling periodically in fingers. This is the first symptom since diagnosis that has truly affected my ability to function. I still (have to) work full time, plus have two small children to chase after. The weakness makes it VERY difficult.
I've been in contact with my rheumy over this, and she ran all the lupus panels and also tested my muscle enzymes, and that all came back completely normal.
So then I went to see my neurologist, and she had me go get a big round of bloodwork to test my vit d, b12, and some neural antibodies (anti-GM1, anti-sulfatide, anti-MAG, and immunofixation). She is also having me do an EMG and nerve conduction study at the end of May (that was the earliest avail). So, all of those answers are still outstanding.
Last Friday, I was feeling SO weak and ill that I literally thought I would die. I almost went to the ER, but as many of you know, that is often an exercise in futility. I have NEVER benefitted from going to the urgent care and/or ER for my weird issues that crop up. They can never identify the issue and end up chalking it up as idiopathic.
I had been doing a lot of researching, and I decided to try supplementing with potassium - to see if maybe it was related to dRTA. I took a few potassium tablets early in the evening on last Friday, and by the end of the evening I felt marginally better! First time in a MONTH! I continued to supplement through last weekend, and by the end of the weekend, my muscle weakness was much improved. I could function again, which was a huge improvement. I've been supplementing since then. Still have residual muscle weakness but it's not nearly as profound as it is when I don't take the potassium.
So then I started going back through labwork to look at my kidney function type tests. I discovered that right after I had my second baby (in 2011), my eGFR was down to 62!!! That same round of labs showed my creatinine at 1.16. My docs who saw those results never brought those things up, so I didn't realize at the time that those things were a red flag. Since then, my eGFR has steadily increased, and is now at 86. So it is much better. BUT, that's still a mild decline in kidney function, from my understanding. Additionally, I have had weird breathing issues that are episodic over the years. These have driven me to the ER, and the only finding was.....LOW POTASSIUM. They dismissed it as me hyperventilating. Plus, my potassium has been trending down over the last several tests. The last reading 3.6 at the end of March - right before all this nightmare started.
Thus, I emailed my rheumy again, telling her I suspected dRTA. Here was her response:
"Distal RTA is a possibility, but in DRTA urine PH is usually greater than 5.5, and the only time you had that that I can see is when you had red blood cells in your urine possibly elevating this PH from having your cycle-Also, your serum C02 levels have been normal which would be low in DRTA, But if potassium citrate seems to be helping, use only in moderation. If you would like to see a nephrologist, I would recommend xxxxxx"
So, I don't know where to go from here. My rheumy obviously gave me some nephrologist recommendations, but it also doesn't sound like she really thinks I have dRTA. I feel stupid going to a nephrologist, if my rheumy doesn't think I have this. BUT, I do feel like there is enough evidence to suggest this could be a real possibility.
SO: what would you guys do? Would you go see a nephrologist? Would you just keep supplementing the potassium and wait and see?
I DON'T want to get labeled as a hypochondriac who is panicking over every issue. But this is a BIG issue. I can barely function unless I'm taking potassium. And I don't want to self treat something so major (IF that's what's going on).
I should mention that I went for 3 years since diagnosis without any huge, major issues. But recently I feel like I'm going from doc to doc and I don't want it to reflect poorly on me. Rheumy was end of March, Neurologist mid April, Gastro end of April, primary doc this week, etc. Ugh!!!!!
Thoughts?? Help help!
For myself I get extreme muscle weakness. Neuro tests have come back normal
I can feel that my electrolytes are off and which do affect muscle contraction, nerve conduction and heart action.
If you like you can copy and paste the search below "Sjogrens Syndrome and potassium" .. talks about the depletion of potassium resulting in electrolyte imbalance, and of the ensuing effects.
The New Sjogren's Syndrome Handbook
books.google.com/books?isbn=0195117247
Steven E. Carsons, ?Elaine K. Harris - 1998 - ?Medical
The most common kidney condition seen in Sjogren's syndrome patients is ... This may cause a severe depletion of potassium in the blood, resulting in an ...
Easy thing is you can make your own electrolyte drink .. just search for homemade recipes online, or under pedialyte recipes,, to enjoy with a ripe banana a day.
Just a possibility.
Since the Rhuem gave you the name of a a Doctor.. I do not feel she is dismissing your concerns.
You can follow this up with you GP as well, ask opinion. Another pair of eyes to look at the labs.
I found a wise medical profession: Her statement: Only you know your body. Follow your instinct.
Hi lolo1979 - I had DRTA back in 2012 before being diagnosed with sjogrens and ended up in the hospital with a potassium level of 2.0 - had to stay there for three days so that they could give me potassium through an IV. My symptoms (and they are very different for everyone I am sure) were pain in the legs (especially the calves), breathing was different but not difficult maybe just a little more labor intensive, heart palpitations and severe headaches.
I was treated in the hospital that year and have not (knock on wood) had it again...but I can often tell when my potassium is getting lower now - I get pains in my neck and legs so I drink OJ, eat bananas and yogurt. I have not taken the potassium pills simply because I was told by my dr not to mess with self-administering potassium (that may be just a weird thing for me).
My dr at the time (fired her after this incident) dismissed my complaints about pains in my legs as muscular (had gone to her at least twice before ending up in the hospital with complaints about painful legs) even though I was not doing any type of exercise!
If you feel your potassium may be getting low, please have it checked with a blood test - easy enough for your dr to order one and find out the results. I would follow-up with the recommendation that your GP gave you - cannot hurt - so what if you go and there is nothing wrong? Better to be safe.
I would also take quietdynamics advice and make a homemade electrolyte drink to see if that helps.
Low potassium is scary - DRTA is VERY scary...take it seriously.
Going from dr to dr should not be construed as being a hypochrondriac although I understand how you feel and what you are saying. I am at the point in my illness where I do not care - if I feel there is something wrong with me - I will seek help and assistance.
Please keep us posted.
Sending positive thoughts your way.
I would see the nephrologist recommended. My reasoning is that while your doctor said it is unlikely, I didn't read "impossible".
I will share this experience I had with a very good neurologist which I often remind myself of when I have a similar query. I was scheduled an EEG, but the neurologist told me it was very, very unlikely to show anything. She was doing it to concretely rule out specific diagnoses. Well, she was wrong. It showed that I had had a seizure prior to the test. So while she was correct in saying it was unlikely, we discovered that I had been having seizures for several years. Often we sjoggies beat the odds medically.
So I remind myself often that I am the expert when it comes to me. And you are the expert when it comes to you. Good luck in getting this worked out.
You do need to see the Nephrologist. I have dRTA and your symptoms sound a lot like mine did. My potassium levels would go up and them back down. Your kidneys can not remove all the acid from your body sending it out in your urine. Instead it returns it to your body causing a loss of potassium and a keeping in of too much calcium. You can easily developed kidneys stones. I know the first GP I went to wouldn't send me to a neph. She kept treating me with potassium but in the long run was just doing more damage to my kidneys. By the time I switch GP my GFR was only 46. I take 2 sodium bicarbs a day to control it and am doing well now. All my kidney test have improved. My GFR is back up to 82 but I'm still spilling protein into my urine. I think a lot of GP don't even know about dRTA. The one we diagnosed me still tried to treat me herself. The third GP finally sent me to a neph.
Thank you all so much for responding! I do think my rheumy is taking it seriously - she never dismisses my concerns over anything. She is very good like that. But I don't think she thinks I have it.
But, based on all your feedback, I decided to go ahead and make the appointment. The soonest this doctor had was June 13th, so unfortunately I guess I will have to wait a month. But it's not the end of the world I guess. I've made it this long, so hopefully I won't keel over before then, ha!!
I also took into consideration the fact that I've got some weird kidney stuff in my immediate family. Sister is undiagnosed sjogrens, and had terrible issues with pre-eclampsia during her second pregnancy, and now has chronic high blood pressure that they've never tried to sort out the reason for. They basically gave her blood pressure meds and sent her on her way. That was 8 years ago.
Her daughter - my niece - was diagnosed with "idiopathic kidney stones" recently. She is only 10. She had blood in her urine and then they took her in and found the stones. I don't know if they tried to get to the bottom of WHY she has the stones. They just told her that "some people have a genetic tendency to form stones" and "to stay very hydrated with water at all times". Ugh. I worry for her very much. My sister refuses to acknowledge that her issues and/or her daughter's could possibly be immune related.
I think she is scared / in denial. can't say I blame her I guess.
BUT, I digress. Hopefully the nephrologist can tell me once and for all what's going on in those kidneys of mine.
Thank you all again for giving me the nudge to make the appt!!
You are very correct about seeing a kidney specialist who can settle this matter once and for all. A GFR of 68 is not terrible and it can be that in a younger person due to dehydration, etc. The main thing with the RTA is the low potassium and that is exactly what the doc will treat you with if you have the problem.
I do't know why docs don't investigate some of the Low norm blood work, etc. I know they account for dehydration and the usual variation in blood work that can occur. The least they can do is to repeat the blood test in 3 -6 months and see if there is a trend. Good luck Irish
RTA isn't the only cause of hypokalemia (low potassium).
It can be the result of a number of medications, including but not limited to; diuretics, laxatives, treatments for asthma, some antibiotics, some stomach remedies, and steroids.
It can also be a result of a bout with diarrhea or vomiting, or excessive perspiration.
Metabolic states resulting from diabetes can contribute, as can a metabolic shift caused by hyperventilation, as you mentioned.
It can also be caused by low dietary intake, for whatever reason, or low absorption for an adequate dietary intake which can occur with some gastric issues or medications, or with a low serum magnesium.
The range of normal for potassium is relatively narrow, and the effects of low or high levels are quite noticeable with even small changes, and can be very dangerous. Please be sure your doctor knows you are supplementing, and have him monitor your levels regularly.