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Extreme calf Soreness and Pain Emg/Ncs show severe damage elevated ck and alsolase- not cfs?!

Discussion in 'General ME/CFS Discussion' started by Silence, Dec 3, 2016.

  1. Silence

    Silence

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    About two months ago i thought i was going through a crash from walking too much. One of the things that bothered me at the time was calf weakness and soreness. It was just like any other crash, I assumed. But after resting in bed for 2 months, closer to 3 actually, My calf muscles have only gotten worse, much worse actually, to the point where i can barely stand. I also noticed my heart rate elevating to around 90-100 at rest.

    One of my main symptoms of cfs/ me is chronic diarrhea which led me to believe that my calf muscle weakness and elevated heartrate was due to potassium deficiency. Went to the E.R. because i couldnt book an appointment with my doctor until a month and at this point these symptoms were starting to really freak me out. Went to the E.R and had a comprehensive metabolic panel done. Bingo! my potassium was 3.2. I was so relieved that it was just a potassium deficiency. I started supplementing for a few weeks with potassium chloride and high potassium foods and now my potassium is 3.4. Still on the low side, but the scary thing is, is that my symtpms arent letting up, not even a bit. And maybe getting worse.

    Hmm. So at this point i wondering to myself: if this is not a potassium deficiency that is causing my extreme muscle weakness and pain with elevatefd heart rate, then what is it?

    Feeling really frustrated, I book an urgent appointment with my neurologist. At the apppointment he doesnt really say much, just kinda casually asks me about my history and onset of current symptoms. Towards the end he fills an order for blood test and an urgent emg and nerve conduction study.

    blood test:

    cpk( creatine kinase) - 1333 (33-124) elevated
    aldolase - 288 ( cant remember standard range, but elevated also)
    b12- 232 (193-934) low end of normal
    mma- havent got it back yet.
    vitamin e- havent got back yet.
    lactate dehydrogenase- high end of normal

    I log on to my health portal and view these test and research what elevated ck and aldolase mean. The first thing that pops up is ALS. At this point im sorta freaking out- "ALS and CFS"!!! After some more research and a dose of benzo, i find out that there are many reasons why these lab values show up. A couple days have gone by and my appointment for emg and ncs have been done. The testing showed moderate to severe muscle and nerve damage. Those were the words he said to me.

    I asked him if it could be caused by a b12 deficiency and he said, straight up, No. Uhh. Then is it ALS? I asked. he said most likely not. Uh... Then what is it. Thinking really hard... after a few moments ... he says i need a muscle biopsy and along with the symptoms i have from cfs/ me, its probably some kind of mitochondrial myopathy.

    After days and days of going to the e.r. and neuro and having my calfs shocked to hell. I am just tired and need to rest. I am still waiting on other blood test to come back and for an MRI to be done.

    At this point I am led to believe that these symptoms have nothing to do with CFS and am in a worse crash than i began. I am really confused whats going on wih my legs as they are gradually getting worse.

    Has anyone gone through sometting like this or have any ideas what to look into as I am just exhauseted and just want some answers. Probably will see a mitochondrial specialist ... Maybe Dr. Naviaux can help as he has looked into cfs and is a mito specialist.

    Thanks for reading.
     
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Must be very worrying, @Silence. I can't help, but thought I'd just let you know that I have read your message! Hope you get some answers soon.
     
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  3. vision blue

    vision blue

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    Have you checked yet for auto antibodies? e.g. can it be polymyositis? That raises CK and aldolase and causes weakness, though more likely to go after proximal muscles. AI disease would also give alot of CFS symptoms Second idea is I assume you are not on statins or other med, or you likely would have mentioned it.

    Anything on the emg besides damage of muslce and nerve? sometimes one can tell if its primarily a nerve problem, and the muscle atrophied as a consequence, or if its primarily a muscle problem, or if its at the junction between them.

    if its a mitochondrial myopathy you can get a test much cheaper and faster on your own, or at least at the same time. if you go to ftdna.com and choose the mitochondrial full genomic sequence, that is a full sequencing of your entire mitochondria. also reveals heteroplasmy, which is often a factor in mitochondrial myopathy; so if its there, it may find it in saliva (if its not all over, sometimes won't be in saliva). Anyway, happy to help interpret results if you get that sequenced since mitochondria and associated diseases is an interest of mine. you probably also know inheritence comes thru the mother for mitochondria, so ask yourself if anyone that comes from your mothers side has ever had anything like this, not necessarily same symptoms or same severity or not in everyone since "penetrance" is highly variable.

    any explanation for the high resting heart rate? or the low potassium? trying to think off hand if any of the mito myopathies do that. i guess maybe. did they also talk about channelopathies?

    any other muslces affected besides one calf?
     
  4. anciendaze

    anciendaze Senior Member

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    Your doctor should definitely consider a channelopathy involving potassium, sodium or calcium.
     
    Silence and Paralee like this.
  5. Kati

    Kati Patient in training

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    Hi @Silence I just wanted to say hello and so sorry about your recent medical issues. i am hoping your neurologist can get to the bottom of your problem and that things can get fixed easily.

    Fingers crossed for you, let us know what transpires.
     
    merylg, Silence and Cohen2 like this.
  6. taniaaust1

    taniaaust1 Senior Member

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    As far as Im aware, long term or severe B12 deficiency can cause nerve damage. Drs arent good with vitamin deficiency symptoms (generally they arent very good with the whole nutrition thing). B12 according to something Ive read online "plays a significant role in the synthesis and maintenance of myelin" so yes I guess it can also damage the muscles if there is a deficiency.

    The range what what is a good normal range for B12, different countries say different things. Here where I are in Australia (and your country sounds to be the same). they have our deficiency levels put at higher levels.. then some of the asian countries..so your level could be said to be quite deficient in some other countries where I think they classifiy underthing under 400 as a B12 deficiency.
     
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  7. Bead Dog

    Bead Dog

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    Sorry you are feeling so unwell. In reading your post, I noticed that you stated digestive problem of diarrhea. That, along with some of the other outcomes from your nerve conduction and muscle testing could really flag problems with b12. Doctors are so quick to dismiss or play down the symptoms from vitamin deficiencies. Did you have a standard blood count with differentials done as well. If so, were your mchc and mcv elevated? They are also flags for b12 deficiency. Hope you get answers soon
     
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  8. Mary

    Mary Senior Member

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    @Silence - your symptoms could also be due to thiamine deficiency, as well as low potassium. Your chronic diarrhea could easily cause a thiamine deficiency as well as B12 deficiency (as well as low potassium - 3.4 is still low): http://www.merckmanuals.com/profess...-deficiency,-dependency,-and-toxicity/thiamin

    Sore calves due to lactic acid buildup are a symptom of thiamine deficiency: http://www.stewartnutrition.co.uk/nutritional_emergencies/acute_thiamine_deficiency.html

    And thiamine deficiency can itself cause diarrhea and nerve damage: https://draxe.com/thiamine-deficiency/

    And low thiamine is associate with high blood pressure.

    And B12 might be involved also. The diarrhea is probably causing several deficiencies.

    I had chronic diarrhea for probably 6 months. I tried several different probiotics with no results, I had SIBO and other gut testing, everything was negative. And then I started drinking Trader Joe's kefir (the same thing is available in many stores now, different name) and within a week I was much better. I avoid dairy in general but now drink kefir about 3 times a week and have not had a problem since.
     
  9. rosamary

    rosamary Senior Member

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    Any skin rashes?
     
  10. wonderoushope

    wonderoushope Senior Member

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    Oh I have something similar! My calves have been sore for the last few months, initially it felt like I pulled a muscle (but there was nothing that I did that would have made it become pulled), but it wont let up and now they are very stiff and it's hard to stand-up straight in the morning. Now the pain moves from my calves to my lower back to my upper back every few days. I also find when I sleep I wake up with pins and needles in my arms or fingers, because of how I am putting pressure on my arms I guess when sleeping. When I wake up my most of my body feels stiff. My lower/middle back kind of feels slightly numb at times. I have booked an appointment to the doctor this arvo!

    I have tried a physio lately hoping stretches would help, but it only offers some relief.

    I don't suffer from diarrhoea. I tend to get constipated or my stool tends to be on the softer side. My stools can be a bit all over the place.

    Thanks for idea of what to ask for. I suspect I am low in something.

    What a timely post!

    The reason I didn't go to the doctor earlier, is that I have had the same pain in my back before and it usually goes away after a few weeks, but not this time around. I also just realised it could be to do with illness. I never put the two together.
     
    Last edited: Dec 4, 2016
    Silence likes this.
  11. Silence

    Silence

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    Thank You all for you replies and your helpful ideas. So I am still waiting to see a Neuromuscular specialist at Stanford to get a diagnosis of what this could be. Found out recently that Stanford cancelled their contract with my insurance.... so..... time to go back to the drawing board. My neurologist says ALS or mitochondrial problem. I really hope its not ALS. The funny thing is, is that my identical twin is having the same problems, and he has exactly the same symptoms as me. My Neurologist told me that ALS is very unlikely, or my twin and I are really unlucky if its ALS because ALS very rarely shows up in twins.

    But some interesting things have shown up on blood test:
    my value Normal range
    Vitamin B6 16.7 ng/mL 2.1 - 21.7 ng/mL Normal
    Vitamin B2 <5.0 nmol/L 6.2 - 39.0 nmol/L Low
    Vitamin B1Blood 73 nmol/L 78 - 185 nmol/L L Low
    Folate, RBC 536 ng/mL >280 ng/mL RBC Normal
    VitD,25-Hydroxy 4 ng/mL 30 - 100 ng/mL Very Low
    Lactate 2.9 mmol/L 0.4 - 2.0 mmol/L High
    Homocysteine 12.5 umol/L 3.2 - 10.7 umol/L High
    AST 62 U/L 0 - 37 U/L High
    Methylmalonic Acid 152 nmol/L 87 - 318 nmol/L Normal
    PYRUVIC ACID 1.45 mg/dL 0.30 - 1.50 mg/dLNormal
    MCHC 36.2 g/dL 31.0 - 36.0 g/dL High

    LIPID PANEL
    Total cholesterol 151 mg/dL <200 mg/dL Normal
    Triglyceride 416 mg/dL <150 mg/dL High
    HDL cholesterol 35 mg/dL >40 mg/dL Low
    LDL -Unable to calculate due to elevated trig mg/dL <130 mg/dL
    Cholesterol to HDL Ratio 4.3 <5.0 Normal
    LDL:HDL Ratio Unable to calculate due to elevated trig 1.00 - 3.50
    VLDL (Calculated) Unable to calculate due to elevated trig mg/dL 5 - 40 mg/dL

    ANA Screen (NEGATIVE)
    A negative Multiplex ANA panel screen indicates the absence of detectable
    antibodies to all of the following analytes: dsDNA, Smith, RNP, Centromere,
    SSA, SSB, Scl70, Jo-1, or Histone.

    CK ISOENZYMES
    Creatine Kinase, Total 980 U/L 44 - 196 U/L High
    CK-BB 0 %(total) 0 %(total)
    CK MB % 0 %(total) 0 - 3 %(total)
    CK-MM 95 % (total) 97 - 100 %(total) Low
    Note
    Presence of atypical electrophoretic band consistent with
    macro - CK Type I, 5 % of total CK.

    I was doing some research and @Mary could be onto something that I was considering for a long time which is Beri Beri. I have to mention that my food sensitivities have been very severe for the past 3 years which have limited me to only 4 foods, and that is White polished rice and some veggies. NO PROTEIN- cannot tolerate due to it causing extreme excitotoxic symptoms: dizziness, anxiety, mania, migraines, ototoxicity, seeing stars. Interestingly, if you read about the origins of thiamine deficiency you will find that In 1884, Kanehiro a Japanese Naval officer observed that beriberi was endemic among low-ranking crew who were often provided free rice and thus ate little else, but not among crews of Western navies and nor among Japanese officers who consumed a more varied diet. (WIKIPEDIA)

    So could this be what is known as Dry Beri Beri, crossing my fingers.
    I have tried supplementing with B1, but it makes me feel very exhausted. When I consider my diarrhea, malabsorption, and very limited diet, It seems like this could be due to a deficiency of the B vitamins and other minerals- Just like some of you have mentioned. I have a hard time tolerating even regular amounts of b vitamins. So I am in somewhat of a predicament. But still, I must pursue a diagnosis because ALS is scary! In the meantime I am supplementing the best I can with b vitamins. Thanks again for your help and well wishes.
     
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  12. Silence

    Silence

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    Thanks for your input. Sorry for the late response- not much has been going on in terms of getting answers. Yeah, I am not on any statins or such medications.

    My neurologist gave this summary for my EMG Studies:
    underwent nerve conduction studies of the lower limbs. They were essentially unremarkable. He comes in today to study the legs. Needle electromyography of multiple muscles of the left lower limb and the right upper limb showed changes of moderate degree of partial denervation in a distal predominant fashion. Interestingly, a few complex motor units were noted in the biceps.

    Don't really understand what this means in terms of disease, but it doesn't sound to good, espcially when he mentioned it could possibly be ALS.

    The next step is likely a muscle biopsy.
     
  13. Silence

    Silence

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    Interesting. I have heard of channelopathies, but really don't know much about it, or how it could be related to me. I tried to do some research but still am a little confused. Would either of you know how one gets tested for channelopathies? And what made you think of this?
     
    Paralee likes this.
  14. anciendaze

    anciendaze Senior Member

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    I know someone with severe hypokalemic periodic paralysis. I've heard about bizarre problems for years, and when I was able to meet him at a periodic paralysis conference in town I noticed that many of those patients had damaged calf muscles. Some were in wheelchairs.

    This is not a good thing to have, but it is better than ALS. It is treatable, but very tricky. You can't depend solely on your doctor, who may never have seen a case. Check with the association web site.
     
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  15. Silence

    Silence

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    Sorry for the late reply and thanks for your input. I am still hoping that it is some kind of b vitamin deficiency. Since I am really restricted to what i can eat, especially proteins of any kind. This would make a lot of sense. But my doctor doesn't think its b12 deficiency because MMA is normal. But he insists that i should still continue with supplementation.

    Sorry for the late reply and thanks for your input. Actually, if you look at my test results above, My MCHC is slightly elevated. But everything else in the CBC/w/differential was normal. With elevated homocysteine,and normal MMA , and elevated folate RBC I am really confused at what my results mean.

    Thanks for your reply. I too really think this could be from a thiamine deficinecy.
    My symptoms sound very much like Dry BERI BERI and would explain the rapid heart rate (although I don't have that anymore),the wasting away of muscles, The overconsumption of rice, and also consuming large amounts of red cabbage which I read has antithiamine factors? I am trying to take thiamine at the moment but it makes me very lethargic. To the point where it feels like i can barely breathe. I am pretty sure I am also deficient in other b vitamins as my testing shows, but am having somewhat of an issue pinpointing the correct way of supplementing when I experience these kinds of reactions.
     
  16. Mary

    Mary Senior Member

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    @Silence - first, I'm really sorry Stanford canceled their contract! It's crazy.

    I can't interpret all your test results, but a few things come to mind off the top of my head: based on your diet, some form of Beri Beri seems very likely. When I first started taking extra B1 almost a year ago, it would initially give me a boost for a day or 2, and then I'd have severe fatigue. I figured it out it was due to hypophosphatemia - low phosphate - which is the hallmark of refeeding syndrome (https://en.wikipedia.org/wiki/Refeeding_syndrome; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/) Refeeding syndrome came to mind because of my experience with Freddd's methylation protocol and adding in methylfolate, which caused my potassium levels to tank, another symptom of refeeding syndrome.

    So I think it's possible some of your difficulties with getting adequate nutrition may be due to refeeding syndrome and various deficiencies related thereto.

    Re protein - does all protein cause excitotoxicity for you - e.g., meat, cheese and so on? Many people can't tolerate whey protein powder because of glutamate causing excitotoxicity; msg causes severe insomnia for me and I avoid it as much as possible. And I found that extra glutamine in supplement form caused me rather severe insomnia - I can tolerate a certain amount but I can't go over it. So I was wondering if protein in all its forms was a problem for you, or if, say, protein in powder form was the problem.

    Because of your severely restricted diet and thiamine deficiency, I think it might be good to find a doctor or nutritionist who works with people with anorexia, who knows how to feed malnourished people safely. Because if you read about refeeding syndrome, you'll see it can be dangerous, but can be avoided if someone knows what they are doing. And perhaps they would be able to deal with your other food sensitivity issues or at least steer you in the right direction.

    I gradually increased my thiamine, had to back off from my initial dose, and also started drinking kefir - high in phosphate - and my tolerance of thiamine increased and now I take 100 mg. daily with no problem.

    Very interesting about your twin brother - I have identical twin sons! I'm sorry he is having problems too, although it does seem to be a good indication you don't have ALS.
     
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  17. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Your calf soreness could be due to a magnesium deficiency. You need magnesium in order to use potassium. If you're already having diarrhea, it may be difficult to increase your magnesium intake. Chronic diarrhea is probably making you lose magnesium and potassium.

    I used to have calf soreness but once I fixed my magnesium intake it went away. I take Mag-Tab SR. It's the only magnesium that works for me.

    Your food sensitivities and living on only four types of food are probably causing multiple nutritional deficiencies. Have you ever been to a gastroenterologist to see what is causing your chronic diarrhea and food sensitivity? Not everyone with ME/CFS has chronic diarrhea, although a lot of people lose weight.

    Your elevated triglyceride level is most likely due to a high carbohydrate diet, but there could be other causes.

    I'm paging @Jonathan Edwards to weigh in on what's going on with you. I really want you to get some help.
     
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  18. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The calf pain and raised creatine kinase strongly suggest some form of myopathy, or primary muscle disease. I doubt mineral deficiency is relevant but combined malnutrition could possibly give this picture. This sort of problem requires a muscle disease specialist. There are rather few such specialists but there will be one in any area with a major university centre.
     
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  19. vision blue

    vision blue

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    I've had another thought when reading the full set of things you just posted yesterday or day before.

    If you follow up on it, let us know either way how it turned out.

    Have you been tested for Hepatitis C? (or perhaps another liver disorder, possibly even inherited). It puts a number of things together. Besides the elevated liver enzymes, it may explain why you can't eat protein. The protein is causing ammonia build up which can produce the things you described. If i'm not mistaken - and hopefully someone will know more - macro ck type 1 has been found in liver disease (as well as myopathy of course). And of course hep C would explain the profound faatigue that must have put you on this forum. Has your twin been tested for liver enzymes? emg? etc? wouldn't fit with hep c i guess, but could fit with inherited liver disorder. NOt sure how straight off how the liver disorder fits with myopathy, but that does not mean the connection is not there.

    emg results interesting. gets hard to know what's cause and what's effect
     
  20. Sidereal

    Sidereal Senior Member

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    It would seem essential to deal with the ongoing malnutrition. Which foods are you able to eat? Do antihistamines or mast cell stabilisers help your food intolerances?
     
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