5-year BFS Re-emerging Tendency

[ittsophiepowellem]

Hi,31 year old female here.I've had a couple periods of BFS-like symptoms. The first round 5 years ago drove me crazy with worry, but when it re-emerged this year, it didn't bother me much. I had workups with neurologists both times (I had to have a brain MRI this year again because my last one had several "bright spots" that actually seemed coincidental and haven't changed in 5 years). My BFS-like symptoms are very mild right now again.I went to a normal GP checkup and he ran standard labs last month. They revealed a very elevated creatine kinase level of ~2800 (normal is under 200) and AST and ALT levels of ~150 (normal upper ranges are ~50 and ~30). These numbers were repeated. I got sent to a rheumatologist to be evaluated for auto-immune problems that would cause muscle damage/inflammation and nothing abnormal has come up indicating auto-immune problems. I ceased exercise -- I have been working out a lot and I don't have any bad symptoms from it -- and the levels came down (may be a coincidence), but were still above normal (CK around 500, just slightly high ALT and AST). I am supposed to have a liver ultrasound now because of my high AST and ALT which seems a little excessive to me given my CK is so high and they are related. Also, further looking at this revealed I have the presence of an atypical macro type 1 CK enzyme. I guess this is found often in people with myositis (and some other issues), but the rheumatogist doesn't think I have myositis.No dr has said all this could be connected with my nerve sensations/symptoms. Do you think these levels could be connected? I really don't have any problems with my muscles at all. Just some buzzing and twitching. I am strong and I tolerate exercise well. Should I visit a neurologist now again and have him look at my CK numbers from the neurological perspective? Sorry if this is excessively detailed. Just wondering if anyone here has experience with odd lab results like these.

 

[TatsuDragon15]

HiAre you taking any multivitamins and medication? Could it be that you are not drinking enough water? I ask this because I used to take a multivitamin and work out alot, BUT I did not drink enough water even though I thought I did and my kidney levels were elevated. Once I stopped taking my multivitamins and started drinking more water the levels went back to normal. I did get some weird tingling feeling/sensation around my mouth and realized the sensation was due to dehydration. Or it might not be related in your case... just throwing out some ideas as to why your CK level may be elevated... but I am no expert. Just speaking from personal experience ) I hope you find out the root cause of why your levels are elevated.

 

[AllGoodHere]

kim_dew; Yes, I had a few odd results but they weren't repeated. When I was running the neuro gauntlet with bcfs they at one time were looking at my high CK values and a few other inconsistencies. My CK values were not as high as your highs and tapered off so they figured it was a bump caused by a combination of things (a tissue injury, stress, and a slight kidney infection all at the same time) and I was past it/healed after some rest and antibiotics. Your rhemy is giving you information you don't know what to do with (how could you, you're not the specialist!) they need to be directing you not worrying you; so call him/her up and ask where to go with this test information. Sometimes you just have to ask more questions to get them thinking. You could also have your latest records sent then telephone the neuros you have been to and ask to be referred after they see your latest results. Have all your records from all sent to that one person and not waste time getting run around and retested by everybody who wants to upgrade their fishing vessel. Someone ought to be able to tell you why all these levels are off so much especially if this is reoccurring consistently on your tests. I'm saying this is because if things hadn't resolved by themselves for me (CK levels going down) the next step would have been looking in to metabolic disorders which are Dx'd by docs (many of them neurologists but not always) who specialize in rare late onset (you're not born with them) metabolic problems. Since these things are uncommon and are diagnosed with a combination of tests, not too many docs are good at diagnosing them (this is what my neuro told me). So if you are going to pursue it, find someone who will be able to look at your results and decide further testing without running you around to 4 or 5 other specialists first (that in itself is enough to make you feel ill). Best of luck and check back.I don't know what tatsu is talking about either.

 

[EyeoftheWild]

Completely agree with 43RichyThe43rd re: blood tests being a snap shot of a day. So many people go down a dubious garden path because some level, or other, was deemed a smidge too high or low. Unless you have accompanying symptoms where the blood test act as a corollary to those tests then I don't see the point. For most things that are truly wrong with us the test result isn't just a bit out, but it's like "wtf" out.Basso

 

[ittsophiepowellem]

Hi, Thank you for your replies.Re: the blood work being just a snapshot... I have had 4 tests spread out over months with my CK high. And I'm not sure that 2800 when normal range is up to 200 is "wtf" high, but it seems like it is getting there. But yeah, it is a littler weird to explore this so much when I don't have symptoms. On the other hand, now I have a bee in my bonnet about this and sort of want to figure out if there is anything to worry about.Wasn't actually taking a multi-vitamin... It might affect the liver values I guess, but i don't think it would cause me to have the unusual macro type CK enzyme which seems to be what is part of my having such weird levels. So confusing... I'm going back to my neurologist on tuesday after the liver ultrasound tomorrow. I'm sure all of this weird blood work has nothing to do with my BFS-like symptoms, but I will let you know if there is anything indicating otherwise.