It's been ages since I last visited this board, and I apologize....

[Sherry20]

I'm hoping everyone's okay!  I see alot of new names and some old. 

Sorry for not visiting for so long, but I've actually been feeling not too bad, lots of the old symptoms, including the neuropathy, are much better but now I have other things going on.

I just had a visit to emergency on Saturday for intense dizzy spells along with trigenimy PVCs (every 3rd beat), SOB, nausea and headache.  They tested for heart damage and the only things that were out of whack were CK at 2594 mmol/l and Potassium at 3.4.

The only things that pop up on the net are Renal Tubular Acidosis and hyperaldosteronism (which I don't believe I have).  Am kind of freaked.  Anyone else with these problems and is RTA serious?

Sherry

[irish]

Sherry, Glad to see you back. Sorry to hear you have a new problem. Darn it!!!

Renal tubular acidosis has the sympom of low potassium. I think that I would pursue this if I was you. One of the tests they do is the ammonium chloride loading test. They check the ph of the urine also. Just a simple test. Low potassium can make you very weak and cause the heart to become irregular also.

Might be good to get a referral to a kidney specialist. As far as I have read this can be managed but it behooves one to get it diagnosed early as possible as the weakness can be really bad. Good luck and keep us updated. Irish

[Sherry20]

Irish, how have you been feeling?  I hope things have been getting better for you.  They've actually been pretty good for me, until recently.  I've periodically come on the site to catch up on how everyone is doing, but I haven't been posting.  Usually by this time of night I'm just too exhausted - and it's even worse now that I have the flu, but I'm having trouble sleeping again....

And yeah, I'm definitely pursuing all this stuff.  I just had another CK, ESR, and Potassium test today, among others.  If they're still out of whack I'll pursue the tests for RTA.  I'm also going to do urine metanephrines and I am currently hooked up to a heart monitor which goes back tomorrow.

I'll let you know what the results are.

Sherry

[irish]

sherry, Thanks for asking!!! I had an allergice reaction to my IVIG product last October and started on a new one in November and I seem to have started to improve some. I don't have as many of my myasthenia moments--especially the ones that affected my breathing some.

I have had more energy etc. I still have bad days and my mornings as still not the best but all in all I am optimistic. I don't expect to see a huge improvement, but even some is good. I managed to do some room painting this spring and am now grouting the new tile in the kitchen. It really wears me out but I load up on my mestinon to prevent muscle weakness and that helps.

Glad to hear that you are getting all these tests done and hope they come up with an answer for you soon. Those darn monitors. I had to have one for 2 weeks and every time I felt like my heart rate had increased I had to hit a button. All I did all day long was punch the button. Turns out it wasn't my heart it was my low hemoglobin that was causing my heart to beat so fast. Duh!!!!! They are lucky I didn't die on the treadmill. I managed to get about 7 1/2 minutes in on the treadmill after getting short of breath in the first 15 seconds. They kept asking me if I wanted to quit. I had walked around short of breath for so long that I just kept plugging away. lol   Irish

[Sherry20]

Cripes Irish!  Yeah, you're really lucky something didn't happen.  So, how are your iron stores now?  I hope they've improved...it seems to be a hard thing to increase once it's depleted, especially as we get older.  And I'm glad that you are feeling better and have more energy, that's GREAT news!  You've been very sick for a very long time.

About the monitor, I just quit punching the button.  I wrote on the sheet that I had 100s of PVCs with SOB and some dizziness throughout, but didn't want to punch the button and write down what I was doing every 10 seconds or so.  I only punched the button when I felt particularly dizzy or when I had a run of PVCs.  I'm hoping they'll see the issues even if I didn't punch that stupid button....

Sherry

[Scottietottie]

Hi Sherry 

Nice to see you again. I'm sorry about your current problems and hope you get to the bottom of them soon, so that you can come up with a plan of action!

Take care - Scottie