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Cancer, MND, Autoimmune, Thyroid? What is going on.
My name is Michael, 24-year-old male, and I am new to the forums, so to cut to the chase since this will be very long/detailed, I am going to begin by listing in point form my symptoms, from which are chronic and which have only happened once or a few times, and past diagnosis', family history -
Chronic symptoms...
- Drenching night sweats, off and on for years, became very persistent almost every night as of a few months to a year ago.
- Extreme, unexplained weight loss despite eating more / not dieting
- Swollen lymph nodes on the right side of the neck, ultrasound shows some upwards of 28mm by 10mm etc
- Weird muscle, tendon / other spasms, seizures or lockups that are very painful. The worst ones feel like my bones are going to snap from the strain or my muscles are going to rip themselves to shreds. Usually limited to one area at a time such as the entire left leg, entire back, or shoulders/neck region. Can trigger it in my left leg by flexing my toes, oddly.
- Muscle, joint, bone pain. Nerve pain, was very uncommon, getting more prevelant mostly in left foot/lower back
- General fatigue, no trigger. Progressively worse despite occasional supplements/eating healthy to maintain energy levels properly. Sleep cycle strange but sleeping 8 hours plus.
- Tingling, numb, prickly sensations in limbs/back
- Flank pain made worse when eating "too much" or when I have to defecate, gets better after defecation
- Thickened skin on feet despite endless treatments, cutting excess skin off, digging out the one "corn", orthotics, etc - after pediatrist uses a scalpel to remove upwards of half an inch to an inch of hardened tissue, it regrows within 5-7 days and looks untouched... he has asked if I have liver issues, autoimmune disorders, and has said himself the rate of growth is "odd" - the resulting pain in my feet has become intolerable.
- Cold insensitivity
- No sense of smell, worse hearing in left ear versus right
- Massive migraines tied to heart rhythm abnormalities
- Heart palpitations, made worse with exercise, can result in nausea, blurring vision, passing out / lightheadedness at minimum if I keep exercising/try to push through it
- Blood pressure swings too much when standing up normally sometimes, can result in fainting
- Rashes on upper body that come and go, little red raised bumps, no rash beyond the little bumps, they do not itch or hurt, wouldn't know they are there without seeing them.
Also red angry joints - usually knuckles. That rash is deep red, not raised, non-itchy, non-painful same characteristics as the bumpy upper body rash, although again, they look completely different.
- Deep-rooted, sharp, stabbing pain in my upper groin/upper leg, basically where your thigh meets your hip. Hard to describe. It is disabling when it happens
- Deep, sharp anal region pain, can only imagine it is similar in nature to what medieval victims on the pyramid torture devices felt. Happens completely randomly and without warning. Luckily, it has happened more times than I can count over my life but not often enough between episodes to be a problem/interference on daily life.
- Electric shock style pains mainly in the left chest/arm area but also in other parts of the body, sometimes tied to very localized muscle twitching.
- Periods of relatively normal urine/defecation, followed by increased urination, diarrhea that's very dark, improperly formed poo with mucous etc, and then goes back to normal, back and forth.
- Longer healing time for wounds, very watery blood that sprays out of wounds, other times very thick blood that seals a wound almost immediately. 2 examples: I cut my finger in half essentially, by accident, blood was spraying on the wall, very thin and watery. Other time dropped a 250-300 pound piece of furniture on my shin carrying it up the stairs, and gouged out a nice spot center of the shin bone, didn't bleed a single drop, looked as if it was cauterized. Everyone noted how strange it was. Other abnormalities, only happened twice - after banging my hand off an object, had a very large area swollen with liquid that was extremely painful and the other time after my Italian heritage got the best of me while ranting, and hit the side of my index finger off the corner of a wall, it swelled up the same just more localized. Had me writhing in pain. It healed as a solid weird bump under the skin and been that way for a long time now.
Singlular/2-3 incidence symptoms worth noting ---
-Toe tip infection that became gangrenous, green/black skin, fluid buildup under nail almost popped it off, sacs of infected tissue needed to be cut open and drained, multiple antibiotics, managed to halt and reverse it without needing to do IV antibiotics/more lancing, although took months to heal
-Uvulitis, needed throat numbing mouthwash and antibiotics
-Woke up one morning sick to stomach, vomitted really black chunky stuff, told my wife I think I vomitted poo... she said my mouth / the substance didn't smell like feces. I flushed it an moved on didn't really think about it, figured my stomach didn't like whatever I ate the night before. Otherwise/after, felt fine.
-Legs stopped working 2 or 3 times, wouldn't say paralysis, more like legs seized up while walking, fell and had to remain on the ground for upwards of an hour, one time late at night, until my legs regained function slowly. Last time was years ago.
-Itchy skin, happens often enough to include in main symptoms but the frequency is spaced out, so I consider it more of a 1 off thing. Skin / certain spots get itchy without rash, or any apparent issue. Rarely the itchiness is bad enough to have my scratching without noticing I am scratching.
Continued in next post...
Chronic symptoms...
- Drenching night sweats, off and on for years, became very persistent almost every night as of a few months to a year ago.
- Extreme, unexplained weight loss despite eating more / not dieting
- Swollen lymph nodes on the right side of the neck, ultrasound shows some upwards of 28mm by 10mm etc
- Weird muscle, tendon / other spasms, seizures or lockups that are very painful. The worst ones feel like my bones are going to snap from the strain or my muscles are going to rip themselves to shreds. Usually limited to one area at a time such as the entire left leg, entire back, or shoulders/neck region. Can trigger it in my left leg by flexing my toes, oddly.
- Muscle, joint, bone pain. Nerve pain, was very uncommon, getting more prevelant mostly in left foot/lower back
- General fatigue, no trigger. Progressively worse despite occasional supplements/eating healthy to maintain energy levels properly. Sleep cycle strange but sleeping 8 hours plus.
- Tingling, numb, prickly sensations in limbs/back
- Flank pain made worse when eating "too much" or when I have to defecate, gets better after defecation
- Thickened skin on feet despite endless treatments, cutting excess skin off, digging out the one "corn", orthotics, etc - after pediatrist uses a scalpel to remove upwards of half an inch to an inch of hardened tissue, it regrows within 5-7 days and looks untouched... he has asked if I have liver issues, autoimmune disorders, and has said himself the rate of growth is "odd" - the resulting pain in my feet has become intolerable.
- Cold insensitivity
- No sense of smell, worse hearing in left ear versus right
- Massive migraines tied to heart rhythm abnormalities
- Heart palpitations, made worse with exercise, can result in nausea, blurring vision, passing out / lightheadedness at minimum if I keep exercising/try to push through it
- Blood pressure swings too much when standing up normally sometimes, can result in fainting
- Rashes on upper body that come and go, little red raised bumps, no rash beyond the little bumps, they do not itch or hurt, wouldn't know they are there without seeing them.
Also red angry joints - usually knuckles. That rash is deep red, not raised, non-itchy, non-painful same characteristics as the bumpy upper body rash, although again, they look completely different.
- Deep-rooted, sharp, stabbing pain in my upper groin/upper leg, basically where your thigh meets your hip. Hard to describe. It is disabling when it happens
- Deep, sharp anal region pain, can only imagine it is similar in nature to what medieval victims on the pyramid torture devices felt. Happens completely randomly and without warning. Luckily, it has happened more times than I can count over my life but not often enough between episodes to be a problem/interference on daily life.
- Electric shock style pains mainly in the left chest/arm area but also in other parts of the body, sometimes tied to very localized muscle twitching.
- Periods of relatively normal urine/defecation, followed by increased urination, diarrhea that's very dark, improperly formed poo with mucous etc, and then goes back to normal, back and forth.
- Longer healing time for wounds, very watery blood that sprays out of wounds, other times very thick blood that seals a wound almost immediately. 2 examples: I cut my finger in half essentially, by accident, blood was spraying on the wall, very thin and watery. Other time dropped a 250-300 pound piece of furniture on my shin carrying it up the stairs, and gouged out a nice spot center of the shin bone, didn't bleed a single drop, looked as if it was cauterized. Everyone noted how strange it was. Other abnormalities, only happened twice - after banging my hand off an object, had a very large area swollen with liquid that was extremely painful and the other time after my Italian heritage got the best of me while ranting, and hit the side of my index finger off the corner of a wall, it swelled up the same just more localized. Had me writhing in pain. It healed as a solid weird bump under the skin and been that way for a long time now.
Singlular/2-3 incidence symptoms worth noting ---
-Toe tip infection that became gangrenous, green/black skin, fluid buildup under nail almost popped it off, sacs of infected tissue needed to be cut open and drained, multiple antibiotics, managed to halt and reverse it without needing to do IV antibiotics/more lancing, although took months to heal
-Uvulitis, needed throat numbing mouthwash and antibiotics
-Woke up one morning sick to stomach, vomitted really black chunky stuff, told my wife I think I vomitted poo... she said my mouth / the substance didn't smell like feces. I flushed it an moved on didn't really think about it, figured my stomach didn't like whatever I ate the night before. Otherwise/after, felt fine.
-Legs stopped working 2 or 3 times, wouldn't say paralysis, more like legs seized up while walking, fell and had to remain on the ground for upwards of an hour, one time late at night, until my legs regained function slowly. Last time was years ago.
-Itchy skin, happens often enough to include in main symptoms but the frequency is spaced out, so I consider it more of a 1 off thing. Skin / certain spots get itchy without rash, or any apparent issue. Rarely the itchiness is bad enough to have my scratching without noticing I am scratching.
Continued in next post...
Hey everyone, update: I did a fecal blood test and had blacl tarry stool while I was collecting samples so I am hopeful they will see what I am talkinh about. For once a teat seemed to align with a negative symtpom so fingers crossed. I am also going to see the original family doctor I had before because they randomly called to follow up. We'll see if he will order an updated scan of the tumor in my spine, maybe a skin biopsy and a lymph node biopsy... All 3 would be wise IMO.
Will keep updating.
Will keep updating.
You have a lot going on! Sorry to hear as I'm sure it has been hard. I am fairly certain it is not all related to one cause. If I were you, I'd look at the most serious issues and in my opinion, this is anything to do with the heart, blood pressure, arrhythmias and chest pain issues. That you've had a diagnosis but it doesn't sound like treatment is a bit strange that a doctor wouldn't follow up with care. But here you are now and it's on to the next doctor for hopefully more help. A primary care doctor to oversee this but you probably should begin working with a cardiologist as well. It sounds like you were a chronic pain patient at one time? Are you currently in a lot of pain?
1 Comments
It definitely has been hard, all of this was done years ago and between then and now, I have had a very hard time in life and it's taken a lot to get to where I can see doctors and do all of that again. Especially hard with the original doctor who referred me to specialists and got all those diagnosis' and other signs written down by someone other than me, have either retired or is impossible to reach, it's a shame because it seems no medical professional will listen to me...
Some of the diagnosis' from back in the day (2013 and before) are arguably wrong but pave the way for figuring out what the true autoimmune disease or other issue causing my Raynauds/Reynauds secondary syndrome is... the positive Babinski sign, positive Hoffman sign, Hyperreflexia, UMN issues pointing to MND and/or specific upper motor neuron disease, 18mm lump in spinal column, scoliosis, vertebrate degradation, heart issues, all of it is well documented and should IMO pave the way for either re-confirmation or re-interpretation of all the data and evidence to figure it out properly/further... I guess.
Or it all can be pieced together exactly as it was from before and do further testing to explain why this is all happening/intensifying, which would definitely be a multiple issue approach versus 1 or 2 major causes, which I personally believe it is (physically)
The problem is all the doctors I've seen won't do anything despite me practically begging them and hospitals I've visited recently are either flat out refusing to do anything or are accusing me of being a drug seeker when I explicitly state I don't want any medications except when whatever is going on is properly figured out through testing, IE biopsy or updated MRI or skin biopsy or colonoscopy or genetic testing for those kind of disease/disorders, or all combined and more (again to determine single or multiple issues or both) and even then I won't take narcotics or other addictive medications unless it is absolutely necessary.
I don't even like taking OTC pain meds, I'd rather smoke a bit of marijuana (I live in Canada where it is legal recreationally and medically) and then go to sleep through the immense pain or muscle spasms etc - so basically avoid it, rather than drug up to bypass it. Completely different. I don't even drink, and when I do once in a purple moon (not a blue moon, even less often), usually after a small amount, I have a terrible reaction where I shake and feel like death about an hour or two after drinking. I hardly smoke cigarettes anymore, can go on and on. So that was probably harder than any of the pain, medical issues or anything.
That particular instance being accused of seeking drugs when visiting an ER just trying to get some help figuring this out again, when I explained I have no family doctor taking this seriously, still searching for one - explained my dislike of taking medications unless completely needed, have a wife and daughter, I have a life, or had a life... have a life I am trying to and fighting to maintain desperately with my wife's help and support, despite everything that we have to battle... I explain it all even with my wife there sometimes telling them too, and then watching obvious drug seekers and people with the flu walk right past while I am told to go home... really has been rough.
To be suffering so much with only OTC meds essentially, and have someone supposed to be a nurse, doctors etc, being told about the lump in my spine needing re-investigation, the night sweats, weight loss, pain, persistently swollen lymph nodes even while on antibiotics, weird thickened skin on my feet, all of it, being offered my records to corroborate it......
And they ignore it all, accuse me of drug seeking or say it's all in my head. Really really does hurt me to my core and it's been happening over and over despite merely requesting PHYSICAL testing to determine the progression of past identified issues or determine anything new going on related to or even unrelated to prior medical history. Nope... "all in your head"
I really wonder if I live in the twilight zone sometimes when I think about it. It is so strange, weird they won't do even an MRI to re-check the TUMOR/MASS wedged between my spine/vertebrate! Even if it is a hemangioma, which they have NOT convinced me of even slightly... why wont they check on it again to see how much it's grown if any, if there are new ones, etc.. If I am not mistaken there is a disease linked to often and severe nose bleeds, and hemangiomas in the spine... even if I only have ONE... again, it's been 6 years... you'd think they'd want to have a look... Nope. Nothing. Swollen lymph nodes since 2013? Nothing. No biopsy. No nothing... Twilight zone!
Besides all of that, I know of no psychiatric condition that causes that extensive array of physiological issues, maybe the fatigue/sleep issues can be argued to be my depression (which is due to a hard life and the physical medical issues making it harder despite overwhelming, superhuman, super-persistent efforts to improve my life in all aspects) but beyond that, I am not sure, and the 2 issues that have been identified, have been thoroughly treated and dealt with, arguably above and beyond the physical issues. So that isn't a reasonable explanation IMO
I did use to be a chronic pain patient, as in addition to all of that they also diagnosed me with Fibromyalgia but I believe it is just muscle/joint/bone issue(s) associated with whatever issues are going on. Again, that was in 2013 and before though. Nothing done in that regards since. Currently in extreme pain in multiple ways/areas, taking Tylenol with codeine and caffeine + Naproxen 220mg + 10 days of Cephalexin 500mg currently
Some of the diagnosis' from back in the day (2013 and before) are arguably wrong but pave the way for figuring out what the true autoimmune disease or other issue causing my Raynauds/Reynauds secondary syndrome is... the positive Babinski sign, positive Hoffman sign, Hyperreflexia, UMN issues pointing to MND and/or specific upper motor neuron disease, 18mm lump in spinal column, scoliosis, vertebrate degradation, heart issues, all of it is well documented and should IMO pave the way for either re-confirmation or re-interpretation of all the data and evidence to figure it out properly/further... I guess.
Or it all can be pieced together exactly as it was from before and do further testing to explain why this is all happening/intensifying, which would definitely be a multiple issue approach versus 1 or 2 major causes, which I personally believe it is (physically)
The problem is all the doctors I've seen won't do anything despite me practically begging them and hospitals I've visited recently are either flat out refusing to do anything or are accusing me of being a drug seeker when I explicitly state I don't want any medications except when whatever is going on is properly figured out through testing, IE biopsy or updated MRI or skin biopsy or colonoscopy or genetic testing for those kind of disease/disorders, or all combined and more (again to determine single or multiple issues or both) and even then I won't take narcotics or other addictive medications unless it is absolutely necessary.
I don't even like taking OTC pain meds, I'd rather smoke a bit of marijuana (I live in Canada where it is legal recreationally and medically) and then go to sleep through the immense pain or muscle spasms etc - so basically avoid it, rather than drug up to bypass it. Completely different. I don't even drink, and when I do once in a purple moon (not a blue moon, even less often), usually after a small amount, I have a terrible reaction where I shake and feel like death about an hour or two after drinking. I hardly smoke cigarettes anymore, can go on and on. So that was probably harder than any of the pain, medical issues or anything.
That particular instance being accused of seeking drugs when visiting an ER just trying to get some help figuring this out again, when I explained I have no family doctor taking this seriously, still searching for one - explained my dislike of taking medications unless completely needed, have a wife and daughter, I have a life, or had a life... have a life I am trying to and fighting to maintain desperately with my wife's help and support, despite everything that we have to battle... I explain it all even with my wife there sometimes telling them too, and then watching obvious drug seekers and people with the flu walk right past while I am told to go home... really has been rough.
To be suffering so much with only OTC meds essentially, and have someone supposed to be a nurse, doctors etc, being told about the lump in my spine needing re-investigation, the night sweats, weight loss, pain, persistently swollen lymph nodes even while on antibiotics, weird thickened skin on my feet, all of it, being offered my records to corroborate it......
And they ignore it all, accuse me of drug seeking or say it's all in my head. Really really does hurt me to my core and it's been happening over and over despite merely requesting PHYSICAL testing to determine the progression of past identified issues or determine anything new going on related to or even unrelated to prior medical history. Nope... "all in your head"
I really wonder if I live in the twilight zone sometimes when I think about it. It is so strange, weird they won't do even an MRI to re-check the TUMOR/MASS wedged between my spine/vertebrate! Even if it is a hemangioma, which they have NOT convinced me of even slightly... why wont they check on it again to see how much it's grown if any, if there are new ones, etc.. If I am not mistaken there is a disease linked to often and severe nose bleeds, and hemangiomas in the spine... even if I only have ONE... again, it's been 6 years... you'd think they'd want to have a look... Nope. Nothing. Swollen lymph nodes since 2013? Nothing. No biopsy. No nothing... Twilight zone!
Besides all of that, I know of no psychiatric condition that causes that extensive array of physiological issues, maybe the fatigue/sleep issues can be argued to be my depression (which is due to a hard life and the physical medical issues making it harder despite overwhelming, superhuman, super-persistent efforts to improve my life in all aspects) but beyond that, I am not sure, and the 2 issues that have been identified, have been thoroughly treated and dealt with, arguably above and beyond the physical issues. So that isn't a reasonable explanation IMO
I did use to be a chronic pain patient, as in addition to all of that they also diagnosed me with Fibromyalgia but I believe it is just muscle/joint/bone issue(s) associated with whatever issues are going on. Again, that was in 2013 and before though. Nothing done in that regards since. Currently in extreme pain in multiple ways/areas, taking Tylenol with codeine and caffeine + Naproxen 220mg + 10 days of Cephalexin 500mg currently
Also, I should note, I never drank much and only can consider 1 year that I drank a lot but I was young. However, since then I drink rarely, but when I do recently, it causes me to shake, feel very cold, and be nauseous. Doesn't seem to matter how much I drink, happens despite not drinking a lot.
Past diagnosis'...
-Reynauds 2ndary syndrome. No diagnosis of main cause, despite extensive testing. Although interestingly, on a recent set of blood work, my ANA was negative, but the Rheumatoid Factor did show up although in low amounts. No explanation of why this is the case and if RF is showing, what that indicates in concert with the negative ANA/autoimmune tests, and the other symptoms/issues
-Osteoarthritis
-Osteoporosis
-Heart Arrhythmia
-Positive Hoffman sign, positive plantar/Babinski sign on the right foot as of 2013. (Left foot appears to display plantar extensor activity now as well) Hyperreflexia noted as well, all in the same examination. Claimed I was displaying UMN disease indications versus MS or other conditions.
-18mm mass that remained the same size, between the spinal cord and vertebrate noted/seen over at least 2-3 scans.
One exam called it an osteocyte, another 2 re-evaluated after a nuclear bone scan and claimed it was likely a hemangioma (sp?) - no explanation for why it isn't a cold mass, no further insight on why it is a hemangioma versus other kinds of masses. If it is a hemangioma, no explanation on how it falls in the 90 some odd percent of begnin, non-affective hemangiomas versus the other 10 some odd percentage of hemangiomas which have a pathological cause and can keep happening, cause symptoms (etc)
-Vertebrate degradation. No further investigation since 2013 despite screaming from the rooftops that I would like it looked at more.
-Scoliosis, thoracic kyphosis, left Adams hump (? I'm lost on that one too, admittedly haven't looked it up or researched it really)
-TMJ
Family history:
Heart disease, prostate cancer, thyroid cancer, diabetes, thalassemia, psoriasis complex, depression.
My current status: No official/doctor guided treatment or tests ordered despite condition getting worse despite eating better, smoking less for years now, down to 2 or 3 smokes a day maybe less some days, I do'nt drink alcohol, or do any serious drugs. I do smoke a bit of THC to help my pain and mainly help me sleep prior to the extreme fatigue kicking in, but I have cut down on that as well in recent years. After a terrible 2nd attempt at help from an ER, I decided to try naproxen again, which I had been prescribed some time ago. It worked a lot more than It used to. I also use to be on gabapentin which helped a lot but due to life I didn't keep up with it then the doctor I was seeing seemed to disappear.
I am actively trying to find a competent family doctor, hoping I found one the other day.
Anyways, this may be the most comprehensive, in-depth write up by a patient ever, that correlates to written reports/exams by doctors, which has upsides and downsides... but to bolster it I am awaiting the 500 - 1500 or so pages and images etc from various places which I will add my current records to and upload (originals currently, some 50 to 75 pages)
Any questions, insight, epiphanies, miracles... please let me know! I am desperate for an answer.
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