Need Support - 9 Months Post Injury

[jessicajenny]

Hi all,It's been over 9 months since I posted. Things are reaching towards maximum anxiety here and I really need some support. Last year saw me with the issue in my left foot/lower leg. EMG showed my usual sural (sensory) nerve slowing with some axonal motor denervation around my ankle. My lumbar MRI showed bilateral pars defect with grade one disc slippage, left greater than right, and a conjoined nerve root left side at L5-S1. I finally saw a neurosurgeon upon the urging of my husband, and he seemed to think it was worth doing the surgery. I had an L5-S1 fusion done in Sept. 2013. All along I am twitching elsewhere, but not so focused on it because two different neurologists have said benign fasiculations.The anxiety started rolling in about 4 months into my surgical rehab. Every time I tried to ramp up my walks, I couldn't due to extreme fatigue. Working with my PT on core strength, I wasn't progressing. I started out with very weak abs prior to surgery, but after really putting in the effort in PT, even he said I should be getting stronger. I began noticing twitching in odd places I hadn't had before, like my abs, low back, forearms, wrist. Sometimes these cramp after the twitching. Sometimes muscles burn, or feel like I've had a strenuous workout, which I haven't. I'm actually fairly sedentary now.I went back to my neuro with my concerns. I passed a clinical exam with these exceptions: I have brisk knee reflexes bilaterally.My ankle dtr's are diminished, left more than right. This is not a change for me. Due to those last two toes on my left foot being weak (this is pre and post surgery) I have trouble walking on my heels. My neuro says these variations can be due to my back. I told him about the exercise intolerance, weak and crampy/burning muscles and increased twitching. My vitamin D had been in the low 20's, so he started me on high dose (50,000 iu/once a week for 8 weeks.) My TSH is fine on 50 mcg. of synthroid. My B-12 is in the 600's now. He also drew some labs.Got a call from his office yesterday. My CPK is 251. It has never been above 60 before. He wants to redraw it in 2 weeks. Really, I'm quite terrified. :crying:

 

[Gracer]

it is still within normal range (which I believe is about 300 max.)bilateral brisk reflexes, widespread twitches, cramps and even sessions of pain resempling inflammatory are common in our condition. I had a three days of absolutely unexplainable pains in my deltoid (very sharp) right now. CPK may be elevated after mild physical activity. flu etc. people with significant muscle deterioration would have TIMES more than maximum limit.some medicine may increase it by the way (statines for sure, there was a report herem who knows, maybe your thyroid medication also increases it).

 

[jessicajenny]

I am confused about the CPK ranges. They usually differ between males and females, females being lower. The range my doctor's office gave was 26-192. On another site I read in the average white female, levels are generally 19-55. People who are very physically active may show increased levels, especially if they work out on the same day they get their blood drawn. I've checked my past labs, and I have been between 50-60.I should add that I had a mildly elevated neuronal ganglionic acetylcholine receptor antibody test. All other autoimmune markers drawn this year have been negative, not even a raised sed rate or crp. I had a PET scan, since these antibodies can be implicated in certain cancers and it was normal. I had about a day to celebrate this until they called me to tell me about the CPK.I have autoimmune disease in my family (mom, grandma.) All these years with all these neurological symptoms, and negative bloodwork every time. I just don't know what to think anymore. I am very tired of being scared, tired of the anxiety, and amazed how quickly it all comes rushing back.

 

[RedKnight]

Hi JcmommieMy name is Houston. I read your post about raised cpk levels and I also had my checked two weeks ago and they were in the 900 range I'm scared to death right now. I go see the rhematalogist next week but a week before my test I was doing PT and I did one day of PT before my test so maybe it's do to physical activity the doctor wasn't to concerned and wants to test again in a week so I also take 125 mcg for hypothyroidism which can cause elevated levels as well but I'm in the same boat I'm scared to death that this could be bad but pray and hope God is on our side. Hope I didn't scare you but your levels are not that high. Houston

 

[ShrkWhisper]

Read my previous posts. 20+ years, elevated CPK 1100's to 500's today, twitching, low vitamin D, random liver enzyme elevations........no weakness.Don't sweat it. More out there that Doc's don't know about than they know. If you have true weakness, can't snap your fingers, lift a gallon of milk, then worry.

 

[veryconfident321]

Those cpk numbers are not high Normal range is up to 300 but this can be effected by exercise and numerous other things If you take 2 weeks off all activity and I mean all activity as is don't even walk to much and take it again That would be your resting cpk Typically it should go down to normal ranges with 2 days of a big work out but a true testing cpk needs about 2 weeks Thanks