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Unknown leg muscle illness/syndrome, please help!
Hi there, been sick for about 6 months now.
Main symptoms:
*very fatigued legs and overall body
*headaches are quite chronic
*pain in upper left side of chest (armpit &top of pectoral muscle), occasionally through left shoulder/bicep.
*legs particularly sore after long day at work (standing doing a retail job)
leg soreness is as if I have run a marathon the day before, but the feeling happens everyday.
Isn't so bad for the first 4-5 hours of the day but at the end of an 8-10 hour shift I am exhausted all over.
Sometimes knees/joints are painful and some nights they are fine, same with feet/toes.
Been tested for most blood stuff and all STDs numerous times.
Have had parasitology and mononucleosis tests- negative.(including things like Lymes disease and mosquito bites)
Haven't had test for Rheumatoid Arthritis yet- will do soon.
Symptoms also include light headedness and light dizzyness, particularly when sitting down.
Blood pressure is 104/59 resting- keeping in mind I am very out of shape for a 27 year old male but not overweight.
Have seen Neurologist+spinal/brain MRIs, and Infectious disease specialist aswell as had endoscopy and colonoscopy which all came back clear.
Should I see a cardiologist or someone who specializes in heart problems? I'm told 104/59 is common in a lot of professional athletes, which I am certainly not.
Chest pain seems to be more muscular but coincides with leg problems...
Any suggestions on what to test for in blood other than ANA test?
thanks so much for your feedback.
Main symptoms:
*very fatigued legs and overall body
*headaches are quite chronic
*pain in upper left side of chest (armpit &top of pectoral muscle), occasionally through left shoulder/bicep.
*legs particularly sore after long day at work (standing doing a retail job)
leg soreness is as if I have run a marathon the day before, but the feeling happens everyday.
Isn't so bad for the first 4-5 hours of the day but at the end of an 8-10 hour shift I am exhausted all over.
Sometimes knees/joints are painful and some nights they are fine, same with feet/toes.
Been tested for most blood stuff and all STDs numerous times.
Have had parasitology and mononucleosis tests- negative.(including things like Lymes disease and mosquito bites)
Haven't had test for Rheumatoid Arthritis yet- will do soon.
Symptoms also include light headedness and light dizzyness, particularly when sitting down.
Blood pressure is 104/59 resting- keeping in mind I am very out of shape for a 27 year old male but not overweight.
Have seen Neurologist+spinal/brain MRIs, and Infectious disease specialist aswell as had endoscopy and colonoscopy which all came back clear.
Should I see a cardiologist or someone who specializes in heart problems? I'm told 104/59 is common in a lot of professional athletes, which I am certainly not.
Chest pain seems to be more muscular but coincides with leg problems...
Any suggestions on what to test for in blood other than ANA test?
thanks so much for your feedback.
Best Answer
Hey potter03,
Welcome to the forum.
You can read my profile for details.
I am not a Physician, as this has not been my choice, for ethical and philosophical reasons. However, I have extensive training and experience in many medical areas. My main focus is Therapy and Holistic Health.
Feel free to post any questions you may have or pm me directly.
Cheers!
Niko
Welcome to the forum.
You can read my profile for details.
I am not a Physician, as this has not been my choice, for ethical and philosophical reasons. However, I have extensive training and experience in many medical areas. My main focus is Therapy and Holistic Health.
Feel free to post any questions you may have or pm me directly.
Cheers!
Niko
You may want to ask for a heavy metal test to see if you have any environmental toxins ...I know Australia like the US has had a lot of aerial spraying and tests have been done here as to the txicity of the stuff they spray ..Do some research check out 'chem trails'
Hi Niko,
Thanks once again for replying.
Can I ask which two symptoms I have you would consider are consistent with these tests, so I can suggest this to my doctor?
I have actually been tested for Lymes disease twice by a lab called 'IMVS' which is considered very good in Australia.( The samples had to be sent interstate) as part of a parasitic test.
Is the blood volume test something that be can done with a normal blood test (ie: send it to the same respected lab that did my Lymes disease serology?) or do I need to see a specialist?
Do you recommend any kind of particular specialists that I should be seeing?
I had a similar question about the 24H Holter ECG, can it be done easily or is it an overnight 24 hour thing?
I've had some more serious 'tight' pains around the heart area in the past few days so I'm going to see my doctor this week- he might have to refer me to a cardiologist?
I'll ask him for the following if it's possible:
Blood Volume test and 24H ECG test...
anything else you'd recommend while I see him?
Thanks so much again.
Your efforts are just astonishing and help people like me know what to ask about and look for where other might overlook.
Thanks once again for replying.
Can I ask which two symptoms I have you would consider are consistent with these tests, so I can suggest this to my doctor?
I have actually been tested for Lymes disease twice by a lab called 'IMVS' which is considered very good in Australia.( The samples had to be sent interstate) as part of a parasitic test.
Is the blood volume test something that be can done with a normal blood test (ie: send it to the same respected lab that did my Lymes disease serology?) or do I need to see a specialist?
Do you recommend any kind of particular specialists that I should be seeing?
I had a similar question about the 24H Holter ECG, can it be done easily or is it an overnight 24 hour thing?
I've had some more serious 'tight' pains around the heart area in the past few days so I'm going to see my doctor this week- he might have to refer me to a cardiologist?
I'll ask him for the following if it's possible:
Blood Volume test and 24H ECG test...
anything else you'd recommend while I see him?
Thanks so much again.
Your efforts are just astonishing and help people like me know what to ask about and look for where other might overlook.
Hi again.
Finally, I'm able to sit down and get a few messages out,
in the peace and quiet of my office at home.
Well, first the blood volume test. This test measures the red cell
volume in ml to body weight in kg. The normal would be 30ml/1kg
red cell volume per Kilogram of body weight. Any result of >15%
less volume would be indicative of Pathogenic Infection.
The other preliminary test would be the 24H Holter ECG.
The clinician would be looking for T-Wave pattern abnormalities, where instead of peaks there are valleys and inversions, in which case the
blood in the left ventricle is not being pumped up through the aorta,
and tissue scarring occurring in the left ventricle.
So the physical evidence would be there, including the irregular heart beat and the scarring, with everything else showing normal. It is one of those situations where if the doctor is not looking for it, it will be most likely missed.
With the previous test, if the doctor is not looking for something specific, then he wouldn't even think about a blood volume test, but if a person in an accident had lost a few pints of blood, that would constitute a medical emergency! The health implications, when the blood volume is significantly lower, can be devastating! Hmm.
And some of your symptoms are consistent with either of these 2 tests,
being positive! How interesting.
I have a couple of alternative ideas, as of what you can do from "Down Under", regarding all this. So keep me posted, let me know if you proceed with the above tests, the results and go from there.
Sounds good? Meanwhile, sure you can do other medical tests,
however, beware of mis-diagnosis. Many symptoms get bundled and given a "trash can" medical label dx, where the sufferer goes to limboland
with no proper treatment or possibility of cure, on maintenance medications-usually for life! That's like a life sentence.
It's a convenient way for conventional medicine to manage complex cases
with variable symptomolory and usually negative findings with most tests.
Auto-immune and idiopathic are two medical terms, that I personally believe, are grossly overused and abused, attributing the cause of the disease to a defective immune system attacking itself or the sufferer inducing his/her own illness. Enough ranting...lol!
There are better options.
Take care.
Niko
Finally, I'm able to sit down and get a few messages out,
in the peace and quiet of my office at home.
Well, first the blood volume test. This test measures the red cell
volume in ml to body weight in kg. The normal would be 30ml/1kg
red cell volume per Kilogram of body weight. Any result of >15%
less volume would be indicative of Pathogenic Infection.
The other preliminary test would be the 24H Holter ECG.
The clinician would be looking for T-Wave pattern abnormalities, where instead of peaks there are valleys and inversions, in which case the
blood in the left ventricle is not being pumped up through the aorta,
and tissue scarring occurring in the left ventricle.
So the physical evidence would be there, including the irregular heart beat and the scarring, with everything else showing normal. It is one of those situations where if the doctor is not looking for it, it will be most likely missed.
With the previous test, if the doctor is not looking for something specific, then he wouldn't even think about a blood volume test, but if a person in an accident had lost a few pints of blood, that would constitute a medical emergency! The health implications, when the blood volume is significantly lower, can be devastating! Hmm.
And some of your symptoms are consistent with either of these 2 tests,
being positive! How interesting.
I have a couple of alternative ideas, as of what you can do from "Down Under", regarding all this. So keep me posted, let me know if you proceed with the above tests, the results and go from there.
Sounds good? Meanwhile, sure you can do other medical tests,
however, beware of mis-diagnosis. Many symptoms get bundled and given a "trash can" medical label dx, where the sufferer goes to limboland
with no proper treatment or possibility of cure, on maintenance medications-usually for life! That's like a life sentence.
It's a convenient way for conventional medicine to manage complex cases
with variable symptomolory and usually negative findings with most tests.
Auto-immune and idiopathic are two medical terms, that I personally believe, are grossly overused and abused, attributing the cause of the disease to a defective immune system attacking itself or the sufferer inducing his/her own illness. Enough ranting...lol!
There are better options.
Take care.
Niko
Sorry I got interrupted. Unfortunatlely the Australian Govt does not recognize
Lyme Disease, therefore there are no LLMDs in Australia.
I spoke with an Aussie friend , who lives in Canada now.
There are Lyme Disease friendly Doctors-not the same.
I'll send you more info later.
gtg again! In betewen things!
Niko
Lyme Disease, therefore there are no LLMDs in Australia.
I spoke with an Aussie friend , who lives in Canada now.
There are Lyme Disease friendly Doctors-not the same.
I'll send you more info later.
gtg again! In betewen things!
Niko
Hey miamifan84,
I will post again later including info on the preliminary tests,
(blood volume and 24H Holter ECG). I
gtg now!
Take care.
Niko
I will post again later including info on the preliminary tests,
(blood volume and 24H Holter ECG). I
gtg now!
Take care.
Niko
Hi Niko,
Thankyou so much for your response.
I am actually in Australia and noticed symptoms after a holiday in the USA/mexico for 6 weeks. (about 3 weeks after returning home).
My Infectious Doc thinks I had some kind of bacterial or viral infection which may have triggered this reaction in my body but we can't work out what.
I am not 100% exactly sure what I've had done although my white blood cell counts and other regular blood counts are all normal according to my ID doc. The vitamin/nutrition tests came back fine as well.
I had a sleep test done and am awaiting the results but I doubt it has anything to do with my legs being so dead.
Is there a particular kind of specialist I should see regarding these adrenal tests you are recommending or the cardio tests?
Should I just ask my Infectious doc to write me up the papers to get the adrenal blood tests done?
If you know of any labs in Australia which would give a complete analysis for the stuff you're suggesting that would be great. My doctor is very open to outside suggestions and is already running and ANA/rheumatoid athritis after I asked him to.
Thanks again for your help and I will keep posting with updates.
It certainly is bizzare to go from being a very healthy 27 year old to barely being able to walk properly in the space of a month!
Your input and advice is very much appreciated.
Thankyou so much for your response.
I am actually in Australia and noticed symptoms after a holiday in the USA/mexico for 6 weeks. (about 3 weeks after returning home).
My Infectious Doc thinks I had some kind of bacterial or viral infection which may have triggered this reaction in my body but we can't work out what.
I am not 100% exactly sure what I've had done although my white blood cell counts and other regular blood counts are all normal according to my ID doc. The vitamin/nutrition tests came back fine as well.
I had a sleep test done and am awaiting the results but I doubt it has anything to do with my legs being so dead.
Is there a particular kind of specialist I should see regarding these adrenal tests you are recommending or the cardio tests?
Should I just ask my Infectious doc to write me up the papers to get the adrenal blood tests done?
If you know of any labs in Australia which would give a complete analysis for the stuff you're suggesting that would be great. My doctor is very open to outside suggestions and is already running and ANA/rheumatoid athritis after I asked him to.
Thanks again for your help and I will keep posting with updates.
It certainly is bizzare to go from being a very healthy 27 year old to barely being able to walk properly in the space of a month!
Your input and advice is very much appreciated.
Hey miamifan84,
Have you been tested for any adrenal deficiencies?
Hypo-Adrenalism from various causes does not become
clinically significant till both your adrenal glands are impaired
by 75%-80%. You fit the profile and there are many conditions associated
with H/A.
Also, have you been tested by an LLMD and did you have a complete
Borrelia/Mycoplasma/Co-infections Panel through a competent reference Lab? IGeneX is the gold standard in USA. Where do you live?
Most Labs will return false negative results.
Many symptoms and conditions linked to these infections mimic over 100 various diseases and syndromes!
Infectious disease specialists usually are not the ones familiar with this , unless they have the LLMD designation.
I will assume that you have done tests for nutritional deficiencies like:
Iron, Vitamin.D, omega-3, B Vitamins, Magnesium (thru tissue mineral analysis-not serum) etc. These deficiencies have to be ruled out.
You have not mentioned any digestive or G/I issues,your related tests were negative, however, should you have any serious deficiencies, you may still have an absorption/assimilation impairment.
The new rule is "You are what you Assimilate and what you Eliminate" lol!
Regarding your blood pressure readings, it is recommended that you take your blood pressure at various times for a week and make a chart so you can draw an average BP. We all experience BP fluctuations throughout the day. Of greater importance may be the "pulse pressure reading".
Just google "Pulse Pressure Chart". Your diastolic and systolic pressures are a bit low-not clinically significant enough for any determination.
Did you get any Cardiovascular tests,ECG, Blood Volume test etc?
An abnormal T-Wave pattern from a 24 Holter ECG test-the one you take home- along with a Blood Volume finding of 15% below normal ranges
are indicative of a low grade undetected pathogenic infection.
This would explain some of the soreness and fatigue as the mitochondria
of the cells in the affected organs/systems, are weakened (energy deficit)
If you wish to pursue this, let me know,I can give you details what the clinician should be looking for, so you can let him/her know.
It's not rocket science, they're not all trained to look for key indicators.
These days, one must be knowledgeable and proactive when it comes to health matters!
YOU are ultimately the one person who will make the difference.
It seems that you are open to investigate all possibilities. That's Great!
So post again or pm personally if you need more details,
or to just give an update.
Hang in there, as this may take a while to resolve.
Take care.
Niko
Have you been tested for any adrenal deficiencies?
Hypo-Adrenalism from various causes does not become
clinically significant till both your adrenal glands are impaired
by 75%-80%. You fit the profile and there are many conditions associated
with H/A.
Also, have you been tested by an LLMD and did you have a complete
Borrelia/Mycoplasma/Co-infections Panel through a competent reference Lab? IGeneX is the gold standard in USA. Where do you live?
Most Labs will return false negative results.
Many symptoms and conditions linked to these infections mimic over 100 various diseases and syndromes!
Infectious disease specialists usually are not the ones familiar with this , unless they have the LLMD designation.
I will assume that you have done tests for nutritional deficiencies like:
Iron, Vitamin.D, omega-3, B Vitamins, Magnesium (thru tissue mineral analysis-not serum) etc. These deficiencies have to be ruled out.
You have not mentioned any digestive or G/I issues,your related tests were negative, however, should you have any serious deficiencies, you may still have an absorption/assimilation impairment.
The new rule is "You are what you Assimilate and what you Eliminate" lol!
Regarding your blood pressure readings, it is recommended that you take your blood pressure at various times for a week and make a chart so you can draw an average BP. We all experience BP fluctuations throughout the day. Of greater importance may be the "pulse pressure reading".
Just google "Pulse Pressure Chart". Your diastolic and systolic pressures are a bit low-not clinically significant enough for any determination.
Did you get any Cardiovascular tests,ECG, Blood Volume test etc?
An abnormal T-Wave pattern from a 24 Holter ECG test-the one you take home- along with a Blood Volume finding of 15% below normal ranges
are indicative of a low grade undetected pathogenic infection.
This would explain some of the soreness and fatigue as the mitochondria
of the cells in the affected organs/systems, are weakened (energy deficit)
If you wish to pursue this, let me know,I can give you details what the clinician should be looking for, so you can let him/her know.
It's not rocket science, they're not all trained to look for key indicators.
These days, one must be knowledgeable and proactive when it comes to health matters!
YOU are ultimately the one person who will make the difference.
It seems that you are open to investigate all possibilities. That's Great!
So post again or pm personally if you need more details,
or to just give an update.
Hang in there, as this may take a while to resolve.
Take care.
Niko
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PrEP is used by people with high risk to prevent HIV infection.
You 2 main symptoms that may be connected to positive findings from the preliminary tests are:
a. cardio-muscular pain - left sided is predominately
suspicious as it may involve the left ventricule- along the nerve pathway.
b. The onset of fatigue, generalized and extremities - linked mostly to
suspected low blood volume, and to a lesser degree to cardio-muscular
deficiency leading to abnormal upper body breathing thus resulting in the production of excess lactic acid (just as you said like a marathon runner,
the effects are IDENTICAL!)
I see the body with its various interconnections -organs, systems, functions,biochemistry, inner and outer enviroment effects, etc. from a wholistic point of view, with absolutely no bias ( a very limiting factor in medicine-as each specialty has its own,primarily, top/down approach ).
Regarding the IVMS Labs, judging from their website, I really doubt, that they are capable of handling Lyme Disease, Mucoplasma and Pathogenic
Co-Infections Testing. Take time to investigate IGENEX Labs website, FYI
These infectious agents happen to be the smallest living organisms, the most evasive and elusive, so detection is extremely specialized!!
Nonetheless, the preliminary tests results will indicate the course of action. You should see a cardiologist as,without intending to alarm you,
it is important to verify or to rule out the suspicions, and proceed with
the appropriate treatment asap. The suspected scarring, even if it may be
progressing very gradually, the cells have the incredible ability to regenerate, given the proper enviroment and support soon, before any serious damage takes place.
The 24H Holter Test is taken home for your convenience. It involves wearing a belt with a recorder and some electrodes that go on your body
for 24H and you can go about normal activities except showering , bathing
or swimming.
There may be a connection with your adrenals, as underlying systemic
infections seem to affect various organs and systems of the body,
starting with the weakest and more predisposed (genetically or otherwise) to infection. An Endocrinologist would be able to verify
adrenal deficiencies and function, without necessarily establishing the potential root cause. Dr Lams Adrenal Fatigue Center website has a great tutorial on adrenal health.
I think that covers everything for now.
Keep in touch and take care.
Cheers,
Niko
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