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

[Paralee]

I remember reading somewhere about sore calfs for that person meant low calcium?

 

[Chocolove]

I too really think this could be from a thiamine deficinecy.

Consumption does not equal absorption.
In the absence of magnesium, one may not be able to utilize thiamine.
Magnesium deficiency is very common, estimated at 70-80% of the population in the USA.
Only about 1% of magnesium is found in the blood, magnesium is needed throughout the body. The blood however is often tested for magnesium, thus it may not reflect the status throughout the body.
**************
"Malnourished patients should also be treated with complete multivitamin supplementation, as they are most likely deficient in many micronutrients, especially the water-soluble vitamins. Because of thiamine’s role in glucose metabolism, IV glucose or PN infusion can precipitate or worsen thiamine deficiency or WE in susceptible patients, so it is important that IV thiamine be given prior to or concurrent with IV fluids containing glucose. Although there are blood tests for thiamine deficiency, it is not prudent to wait for test results, which may take several days, prior to giving thiamine to a patient who is suspected to have WE, as immediate treatment is crucial.

Malnourished patients are also at risk for refeeding syndrome, so potassium, magnesium, and phosphorus levels should be monitored daily during initial treatment. Magnesium is of particular importance due to its role in thiamine metabolism and as a cofactor of enzymes. There is a low risk of anaphylactic reaction to IV thiamine; thus, dilution in 100 mL of normal saline or 5% glucose and slow infusion over 30 minutes is recommended, and treatment should be done in a facility that can treat anaphylaxis.3"
From: http://www.todaysdietitian.com/newarchives/100610p78.shtml
October 2010 Issue
Thiamine Deficiency — RDs Are Key Players in Prevention and Treatment
By Theresa A. Fessler, MS, RD, CNSC
Today’s Dietitian
Vol. 12 No. 10 P. 78


...sometimes a thiamine deficiency is caused by a deficiency of magnesium and therefore it will not be cured by the administration of thiamine alone.
http://www.mgwater.com/rod06.shtml

[QUOTE="Silence, post: 807401, member: 17205"]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[/QUOTE]

http://health.usnews.com/health-new...ow-to-recognize-and-treat-thiamine-deficiency

http://www.stewartnutrition.co.uk/nutritional_emergencies/acute_thiamine_deficiency.html

 

[anciendaze]

I just want to remind people that this patient has evidence of actual damage to muscles, not simply a nutritional deficiency. Besides the problem that specific muscle damage may be hard to reverse, there is a real possibility the proteins released from damaged muscle fibers will in turn damage the kidneys. That can be life-threatening.

There are still many possibilities to rule out, and we have not seen a complete medical history on-line. Another unusual disease with a genetic cause would be late-onset muscular dystrophy. In that case the problem is a failure to repair normal damage to muscles, which then accumulates slowly over years. All these conditions are rare in practice, but in this case there is a definite trail of objective markers to follow.

 

[Sidereal]

Also, he already said he has low serum potassium. Taking magnesium in the context of hypokalemia can make the latter much worse. We have many old posts/threads on this topic. In some circumstances, seemingly innocuous nutritional advice can end up being fatal.

 

[pogoman]

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



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


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.

Hi Silence.
I quoted just the labs and relevant, your symptoms and test results are similar to mine.

Just some background.
I too have muscle pain, high cpk, aldolase and triglycerides and allergic to sulfur compounds (B1, biotin, MSM etc).
Also had abnormal EMG on my thigh which is where the biopsy sample was taken.
The muscle biopsy came back as a probable toxic myopathy, no inflammation or ragged red fibers reported.
Inflammation labs were negative, the working diagnosis is necrotizing autoimmune myopathy.

Currently on methotrexate after doing 10 months of IVIG therapy.
The methotrexate has helped some and stabilized symptoms altho I don't know yet if its lowered the CPK, I see my neuro in a couple weeks so will be doing labs soon.

Regarding the B1 reaction, for me I had to go on high dose generic Zytec (cheap at Costco).
I was tired with sinus problems and itchy eyes and it took care of it, I still take B1 and Biotin but only a couple times a week now.

I've also had bad peripheral edema which sulfer compounds and NSAIDS worsened, I've dropped salt use and plan to ask my neuro to have me checked for ascites.
I believe its the fluid buildup that moves to the extremities while sleeping and is pressuring the nerves causing pain and stiffness in the morning.

But anyhoo enough about me, have you thought about getting the muscle biopsy?
That can be very helpful in diagnosing by identifying what kind of myopathy you have or at least ruling out others.

 

[Ambrosia_angel]

Thank you for sharing your story @Silence & @pogoman. Although my symptoms are different it seems like I'm going through something similar in regards to the muscle issues. I had muscle issues as my main symptom all throughout being ill with ME and now I've relapsed but this time I've started getting swelling in what seems to be the muscles of my hands. Worse is that I've been referred to an arthritic clinic when my joint are fine from what I can tell. My issue is not arthritis but a likely autoimmune related myopathy with atypical symptoms such as distal muscles affected and fluctuating symptoms. I also have had a chronic chesty cough since oct.

Since I've relapsed I've done basic blood tests and x rays but because its a joint clinic they haven't tested for CK test yet. They have tested antibodies and inflammation though which im waiting for now. I've already had 2 RF tests done separately that come back as high.

When these symptoms first started did you have thorough investigations when/if you were diagnosed with cfs or is it only now that they've started to progress? I (thought I) had thorough investigationg and still can't get my head around how diseases can sit undetected for years then suddenly show up on tests.

I'm just curious about the type of weakness you both have too? Is it like you "can't" do something or is it that you are weak when you do something. Everything I've come across says that people can't e.g. lift their hands above their heads. I can do it but I get more discomfort plus weakness but not really that much pain.

This is very stressful for me as this year I had so many plans. And now I'm getting some anxiety and probably mild depression because it's bringing back memories from when I was first ill. This can't be helping my symptoms at all.

Hopefully I haven't hijacked this thread.. Sorry if I have.

 

[vision blue]

Has the OP gotten to my liver suggestions yet? curious.

 

[Silence]

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.

I've recently been supplementing with magnesium and potassium with little to no effect on my leg situation.
But it does help with my burning brain.

I have seen a gastroenterlogist in the past and had a colonoscopy and endoscopy done- Everything was reported as normal, but that was before my situation became this bad. Perhaps I should go see another one. I am certain there is some kind of infection or dysbiosis in my intestines as cinnamon basil is the only thing that prevents it. Those essential oils are pretty strong antimicrobial agents. Unfortunately, I am becoming sensitive to the basil .

 

[Silence]

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.

My Primary GP referred me to a close by teaching university hospital with an appointment to see a neuromuscular specialist at UCDavis medical Center, is this what you mean by a muscle disease specialist? Can you recommend a university center with such a specialist in CA?

 

[Silence]

Also, he already said he has low serum potassium. Taking magnesium in the context of hypokalemia can make the latter much worse. We have many old posts/threads on this topic. In some circumstances, seemingly innocuous nutritional advice can end up being fatal.

I am curioius- I have been supplementing with magnesium and potassium. How does magnesium make hypokalemia worse?

 

[Silence]

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

How can I test for ammonia ? Is it simply an ammonia serum blood test?

I've been tested for a lot of things, but I cant remember if Hep C was one of them, but I can say that I have Gilberts syndrome- they say its benign though. It causes bilirubin to be elevated, only mildly though. My twin has had his liver enzymes tested and they are normal. He has not had an emg yet, but he is following the same symptoms as me. I've had my porphyrins tested before and that came back elevated for coprophoryins which i think could indicate a liver problem among other things, such as heavy metals, hereditary porhyria etc.

 

[Silence]

Hi Silence.
I quoted just the labs and relevant, your symptoms and test results are similar to mine.

Just some background.
I too have muscle pain, high cpk, aldolase and triglycerides and allergic to sulfur compounds (B1, biotin, MSM etc).
Also had abnormal EMG on my thigh which is where the biopsy sample was taken.
The muscle biopsy came back as a probable toxic myopathy, no inflammation or ragged red fibers reported.
Inflammation labs were negative, the working diagnosis is necrotizing autoimmune myopathy.

Currently on methotrexate after doing 10 months of IVIG therapy.
The methotrexate has helped some and stabilized symptoms altho I don't know yet if its lowered the CPK, I see my neuro in a couple weeks so will be doing labs soon.

Regarding the B1 reaction, for me I had to go on high dose generic Zytec (cheap at Costco).
I was tired with sinus problems and itchy eyes and it took care of it, I still take B1 and Biotin but only a couple times a week now.

I've also had bad peripheral edema which sulfer compounds and NSAIDS worsened, I've dropped salt use and plan to ask my neuro to have me checked for ascites.
I believe its the fluid buildup that moves to the extremities while sleeping and is pressuring the nerves causing pain and stiffness in the morning.

But anyhoo enough about me, have you thought about getting the muscle biopsy?
That can be very helpful in diagnosing by identifying what kind of myopathy you have or at least ruling out others.

Yeah I am in all likelyhood going to get a muscle biopsy. I just have to get an appointment to see the neuromuscular specialist. It seems they are really booked this time of year. Thanks for sharing your story and experience, It gives me something else to bring to my neurologist to cross off the list.

Is Methotrexate an immune-suppresant drug? I am not sure if I'll do too well with that as I already have Low cd4 and low subclass igg3 deficiency.

How did treatment with ivig go? I wanted to try this a while ago, but was told that in order to get it, I would need 2 or more subclass deficiencies.

Keep me updated on how your appointments and blood test go in the coming weeks. I would like to know if your cpk is still high.

 

[Silence]

Thank you for sharing your story @Silence & @pogoman. Although my symptoms are different it seems like I'm going through something similar in regards to the muscle issues. I had muscle issues as my main symptom all throughout being ill with ME and now I've relapsed but this time I've started getting swelling in what seems to be the muscles of my hands. Worse is that I've been referred to an arthritic clinic when my joint are fine from what I can tell. My issue is not arthritis but a likely autoimmune related myopathy with atypical symptoms such as distal muscles affected and fluctuating symptoms. I also have had a chronic chesty cough since oct.

Since I've relapsed I've done basic blood tests and x rays but because its a joint clinic they haven't tested for CK test yet. They have tested antibodies and inflammation though which im waiting for now. I've already had 2 RF tests done separately that come back as high.

When these symptoms first started did you have thorough investigations when/if you were diagnosed with cfs or is it only now that they've started to progress? I (thought I) had thorough investigationg and still can't get my head around how diseases can sit undetected for years then suddenly show up on tests.

I'm just curious about the type of weakness you both have too? Is it like you "can't" do something or is it that you are weak when you do something. Everything I've come across says that people can't e.g. lift their hands above their heads. I can do it but I get more discomfort plus weakness but not really that much pain.

This is very stressful for me as this year I had so many plans. And now I'm getting some anxiety and probably mild depression because it's bringing back memories from when I was first ill. This can't be helping my symptoms at all.

Hopefully I haven't hijacked this thread.. Sorry if I have.

They should have tested you CK- its so easy to order and routinely done.

Actually, the muscle pain and cramping is a realtively new symptom. I didn't really have these sort of symptoms when I first got sick with cfs, but I did have nerve pains and neuropathy. My neurologist thinks that maybe all of my illnesses are one disease: I have been diagnosed with Gilberts syndrome, Ehlers-Danlos syndrome, CFS, and Fibromylagia, and Porphyria. I'll have to wait and see what disease they give me this time.

Its kind of hard to explain my weakness as I experience many types. I would describe the weakness in my legs as a lactic acid burn/ aching feeling and at the same time there is a sensation in my whole body (inlcuding the brain) which feels like energy is depleting at a very fast rate which is probably very common to people on this forum.

When I think back, I started showing signs of "something" like muscle twitches, burning sensations, and fatiguing easily back a couple years ago, but I always assumed it was just a part of my cfs..... until it wasn't.

Hope you can get the help you need.

 

[Jonathan Edwards]

My Primary GP referred me to a close by teaching university hospital with an appointment to see a neuromuscular specialist at UCDavis medical Center, is this what you mean by a muscle disease specialist? Can you recommend a university center with such a specialist in CA?

In the UK there are a small number of physicians who specialise in muscle disease. They may be neurologists or rheumatologists but more often neurologists now. Maybe one per 2 million of population. I am afraid I do not know how the system works in the US but primary muscle disease is uncommon so there are not likely to be many more specialists with good experience.

 

[vision blue]

Hi Silence-

Amnonia just a simple blood tes
https://labtestsonline.org/understanding/analytes/ammonia/tab/test/
but if youre cutting out all protein, perhaps you won't be able to detect elevations

I don't think gilbert syndrome would give you ALT and AST. elevations (?)

I really think a hepatologist would be of use for a whole bunch of your symptoms, even though youre probably doctored out. And hopefully while youre waiting you can ask another doc to at least test for Hep C (and amnonia eating protein)

 

[Ambrosia_angel]

They should have tested you CK- its so easy to order and routinely done.

Actually, the muscle pain and cramping is a realtively new symptom. I didn't really have these sort of symptoms when I first got sick with cfs, but I did have nerve pains and neuropathy. My neurologist thinks that maybe all of my illnesses are one disease: I have been diagnosed with Gilberts syndrome, Ehlers-Danlos syndrome, CFS, and Fibromylagia, and Porphyria. I'll have to wait and see what disease they give me this time.

Its kind of hard to explain my weakness as I experience many types. I would describe the weakness in my legs as a lactic acid burn/ aching feeling and at the same time there is a sensation in my whole body (inlcuding the brain) which feels like energy is depleting at a very fast rate which is probably very common to people on this forum.

When I think back, I started showing signs of "something" like muscle twitches, burning sensations, and fatiguing easily back a couple years ago, but I always assumed it was just a part of my cfs..... until it wasn't.

Hope you can get the help you need.

Thank you for responding! Our situations sound very similar. I also get the same kind of weakness

I know they should've done a CK :/.. I think it's because the GP saw the swelling and stiffness (which is due to the muscle swelling) but didnt properly examine where it was and at the time of the referral my overall body weakness wasn't as bad as it is now. My hospital appointment is in under a week so I'm just going to wait till then and see if they'll order it.

This time round I'm going to ask for print outs of all my results. In the NHS they never usually do this but now I don't trust them to give me all of the details. Like an A&E doc told me my eosinophils were high and my GP hasn't mentioned it once. I researched to find out that my levels are classed as moderate eosinophilia Which I'm guessing is another reason I was referred.

This is gonna be another long journey because I am sure whatever illness I have that it's either rare or my symptoms are atypical which will make it hard to diagnose.

Good luck with your journey! I'll be keeping track

 

[pogoman]

Yeah I am in all likelyhood going to get a muscle biopsy. I just have to get an appointment to see the neuromuscular specialist. It seems they are really booked this time of year. Thanks for sharing your story and experience, It gives me something else to bring to my neurologist to cross off the list.

Is Methotrexate an immune-suppresant drug? I am not sure if I'll do too well with that as I already have Low cd4 and low subclass igg3 deficiency.

How did treatment with ivig go? I wanted to try this a while ago, but was told that in order to get it, I would need 2 or more subclass deficiencies.

Keep me updated on how your appointments and blood test go in the coming weeks. I would like to know if your cpk is still high.

Methotrexate was originally a cancer chemo drug but in lower doses it helps autoimmune diseases.
Not sure if it suppresses the immune system, in cancer it blocks folate.
I was worried about getting sick on this but the opposite has occured, have not gotten a cold or flu at all this winter or last winter when I was on IVIG even tho coworkers were sick.

IVIG did help symptoms but not CPK levels so neuro stopped it, it was also very tiring due to lack of sleep from working late the night before then waking up early on treatment days.

My labs this month showed CPK still high, I forgot to ask if aldolase was tested.
Overall the CPK is about 200 points lower than the highest it reached back in 2015 at around 740.
I saw my neurologist this past Monday, I showed him the pictures I took of my leg edema and he agreed ascites or enlarged organs is a possibility.
So he referred me for an abdominal ultrasound and I have an appointment this Tuesday night at the hospital's radiology dept.

 

[jaybird1]

Thanks everyone for sharing your stories - I thought what I was experiencing was unique to me but turns out I'm not alone! I too get the painful calf/leg muscles, twitching, burning and energy sapping feeling and also have Gilbert's Syndrome and Restless Legs Syndrome. I've always had yellow tinted eyes and pain in the liver area, but my GP dismisses it after an ultrasound showed a few fatty spots on the liver (I've lost weight since so hoping that may have improved liver function a little). I had a whole host of blood tests conducted when first diagnosed with CFS by the infectious diseases clinic at Addenbrookes, which showed I'd also had Glandular Fever. I'd be interested to see how people get on with their testing as my GP is reluctant to refer me to anything

 

[Isaiah 58:11]

Hmm... I have something similar too. I wish I knew what it was! I have had far fewer tests than the OP and others.

In 2006 I went to ER for vision issues and headache and I don't remember what else and they admitted me because my CPK was over 2k. They released me a day later saying I had some sort of unspecified neuromuscular degenerative disorder and I needed to immediately see the specialist they were referring me to. The specialist, however, refused to see me because he only saw patients previously diagnosed with MD.

I contacted the hospital for a different referral but they said as a teaching hospital there was no way to track down my doctor (how about my chart? ) and to get a referral from a regular neurologist to see a neuromuscular specialist. I found a PCP, got the Neuro referral, and after nothing but abnormal EEG was referred to Mayo, but just like with OP at Stanford the insurance changed contracts and I was SOL. From then on I was "fine" because doctors schedule months out and by the time I had my appointment my labs would look normal. A last-ditch effort with neurology finally caught CK up again (about 2k, like before) in 2015. She suggested polymyositis as a possibility but I was too ill to make a return visit before my insurance coverage switched to high deductible and she didn't know of a neuromuscular doctor that wasn't pediatric.

Just before I lost the insurance coverage I was sent to a local neuro who thought B12 might be the issue because my serum levels are really, really, insanely high without supplementation, but my MMA was normal. He said I have some sort of unusual peripheral neuropathy because my hands are worse than my feet or something like that. I too think B1 has something to do with this as I have also fit dry beriberi symptoms. I was low in B1, B6, and biotin and have been supplementing with sublingual B complex but think I will now stop because I have had vision and hearing problems develop over the past weeks or months and I do not know if this has managed to push B12 into a dangerous zone.

I am suspected to have some sort of mitochondrial dysfunction but it is, again, unspecified. Someone suggested my mother may have something like CPT2 or Maple Syrup Urine Disease (she is undiagnosed and presents differently than I) and my acyl carnitine ratio is off if I don't supplement with carnitine (ALCAR 1 gram 2x daily). This shows up in weird places like when I tried a keto diet and had urine ketones >120 in about 48 hours (I am not diabetic). I have now had 2 or 3 doctors say I have mito issues but I have not seen a specialist for the same reason as the neuro - no one can find someone to refer me to that will see an adult.

I too have had an elevated (for me) resting heart rate. After onset it jumped to over 90 (they excluded me from our class's HR statistical analysis for this ) and at the times I have been severe it is over 120.

I think potassium/electrolytes have something to do with it though I do not understand the interplay. When I am in crisis salt is essential (as are carbs) and I have generally needed to drink electrolyte beverages all day to stay in an ok zone. I did also have high calcium once. Years ago I was trialed on Spironolactone and I couldn't do it because of low BP, but I had a low or normal salt diet. I am on it again and seem to be fine - even without electrolyte beverages, but I salt load to the point of high serum levels and drink a lot of coffee (also a diuretic but seems to raise my blood pressure :thumbdown. Anyway, Spiro is a potassium sparing diuretic and supposedly can raise levels dangerously high, but since I have been on it this time (4 months?) I have not had the same sort of crises.

Phew. I feel as if I have written a book. I hope this is all coherent and on topic and offers information helpful to others with similar problems. I will reread and edit (delete?) tomorrow when, hopefully, my brain and eyes are playing nicely again.

Finally, I insert my plea here: if you know of a neuromuscular or mitochondrial specialist in the US that can help me please let me know!

 

[Paralee]

@Isaiah 58:11 , have you tried a little calcium supplement? If your diuretic is keeping your potassium is it letting your calcium be eliminated? Just a thought...
Sorry I don't know one or I would be calling also.