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Muscle Autoimmune Disorders
I've been diagnosed with a chronic bladder disorder called Interstitial cystitis, endometriosis, recent costochondritis(with no trauma or respiratory virus) and past episodes of SVT. About 5 years ago I began having bad muscle pain, joint pain, fatigue and weakness(sometimes not even having the strength to open a loose jar top). I was seen by a rhumatologist who ran blood panals. Negative ANA but my CPK levels were off the charts. She requested I have a muscle biopsy but I worried and decided to ignore things hoping they'd get better. We'll things have progressed. All my symptoms are even worse and now I'm getting more of these strange calcium deposits on my skin(like little hard balls under my skin in numerous locations) and suddenly have a fibro breast tumor. All of my symptoms seems so all over the place between the diagnosed and undiagnosed. I made an appt with this rhumatologist finally deciding I can't live this way but it's not until mid january. but every day I feel even more and more tired and can barely function. I work full time. Are they're any other types of doctors besides rhumatologists who handle these kinds of issues and are there any other tests besides a muscle biopsy that diagnose these kinds of things?
Thank you
Thank you
Best of luck with the Neurological testing but one
more thing I need to tell you( I promise I won't "bug" you anymore, lol!) :
Vitamin B12 is a very important nutrient in the nerve tissue of the nervous system, vital for re-building the myelin sheath by carrying methyl groups to the nerve tissue.
The only form of the vitamin used in the nervous system is Methylcobalamin.
It's possible to have low B12 in the nerve tissue, even if your overall levels in the body are normal!
The blood brain barrier (BBB) makes it difficult for adequate methylcobalamin to cross, so it might save you a lot of time and agony, should this be linked to some of your neurological issues.
CSF testing for homocysteine levels, in regards to nerve tissue methycobalamin deficiency, would be the more reliable test (not MMA, which is for general tissues B12 testing)
Please consider to bring this up at your next Neuro appointment.
If you do a search for this deficiency and the symptoms associated with it, you will understand the importance.
Take care.
Niko
more thing I need to tell you( I promise I won't "bug" you anymore, lol!) :
Vitamin B12 is a very important nutrient in the nerve tissue of the nervous system, vital for re-building the myelin sheath by carrying methyl groups to the nerve tissue.
The only form of the vitamin used in the nervous system is Methylcobalamin.
It's possible to have low B12 in the nerve tissue, even if your overall levels in the body are normal!
The blood brain barrier (BBB) makes it difficult for adequate methylcobalamin to cross, so it might save you a lot of time and agony, should this be linked to some of your neurological issues.
CSF testing for homocysteine levels, in regards to nerve tissue methycobalamin deficiency, would be the more reliable test (not MMA, which is for general tissues B12 testing)
Please consider to bring this up at your next Neuro appointment.
If you do a search for this deficiency and the symptoms associated with it, you will understand the importance.
Take care.
Niko
Thanks for your reply Niko.
I do put strong emphasis on natural remedies and medicine. Unfortunitly for this I think we're looking at neurological issues as I've just come back from the rhumi and her emphasis was on the importance of the emg's as I have foot drop, which is apparently why I trip so much and why I feel like I'm walking on sprained feet and ankles all the time.
Depending on the emg's/brain MRI she'll know more whether I'll need a muscle biopsy or something else...who know's I'm not well versed in Neurological issues so I guess I'm split between rhumatology and neurology for the time being. I will continue with my natural rememdies and medicine though while taking the prescribed stuff.
Thank you Niko
I do put strong emphasis on natural remedies and medicine. Unfortunitly for this I think we're looking at neurological issues as I've just come back from the rhumi and her emphasis was on the importance of the emg's as I have foot drop, which is apparently why I trip so much and why I feel like I'm walking on sprained feet and ankles all the time.
Depending on the emg's/brain MRI she'll know more whether I'll need a muscle biopsy or something else...who know's I'm not well versed in Neurological issues so I guess I'm split between rhumatology and neurology for the time being. I will continue with my natural rememdies and medicine though while taking the prescribed stuff.
Thank you Niko
Hi again.
Well, I get the feeling that your doctor just came up with this diagnosis,
due to the lack of finding anything solid.
Myositis to me is just a general medical label meaning inflammation of the muscles and the fms diagnosis, since it's not a specific condition, but rather a syndrome, many "like" medical conditions that match many of the possible fms symptoms, fit under this label.
I can see the metabolic connection and I still feel strongly that because you seem to have a systemic condition, it is related to thyroid function, low level underlying infection and chronic inflammation.
There's a muscle toxin called tartaric acid which also interferes with metabolic processes (krebs cycle) as it is a Malic acid antagonist.
Malic acid is an essential compound in biochemical processes in the body.
By avoiding carbs ( the preferred diet of tartaric acid are fungal metabolites from carbs) you can avoid excess production of tartaric acid and to increase the levels of malic acid you may take apple cider vinegar (raw & organic), one of the best sources of malic acid, if you can take this safely.
Your doctors will not tell you these things as it is not "established" protocol.
There is a lot you can do, but I feel that relying on conventional doctors only, will not be enough to regain your health.
There are just too many gaps and inconsistencies with their approaches
and testing. As for treatment, usually symptom maintenance meds , normally do not inspire most patients.
Message me if you want details on anything at all.
Wishing you well.
Niko
Well, I get the feeling that your doctor just came up with this diagnosis,
due to the lack of finding anything solid.
Myositis to me is just a general medical label meaning inflammation of the muscles and the fms diagnosis, since it's not a specific condition, but rather a syndrome, many "like" medical conditions that match many of the possible fms symptoms, fit under this label.
I can see the metabolic connection and I still feel strongly that because you seem to have a systemic condition, it is related to thyroid function, low level underlying infection and chronic inflammation.
There's a muscle toxin called tartaric acid which also interferes with metabolic processes (krebs cycle) as it is a Malic acid antagonist.
Malic acid is an essential compound in biochemical processes in the body.
By avoiding carbs ( the preferred diet of tartaric acid are fungal metabolites from carbs) you can avoid excess production of tartaric acid and to increase the levels of malic acid you may take apple cider vinegar (raw & organic), one of the best sources of malic acid, if you can take this safely.
Your doctors will not tell you these things as it is not "established" protocol.
There is a lot you can do, but I feel that relying on conventional doctors only, will not be enough to regain your health.
There are just too many gaps and inconsistencies with their approaches
and testing. As for treatment, usually symptom maintenance meds , normally do not inspire most patients.
Message me if you want details on anything at all.
Wishing you well.
Niko
So a few developments, the rhumatologist I saw thought a diagnosis of Fibro plus myopothy. My CPK was elevated once again but not high enough she felt to warrant a muscle biopsy.
But things continue to progress with my muscle weakness and fatigue. Over exursion causes them to tighten up so much that I can barely stand the sensation. This happens more in the afternnon after I've been working and moving around. And if I put forth too much effort my muscles will cramp like a charlie horse.
I tried exersizing but my muscles just began to burn and I gave up on that pretty quickly.
So the rhumi wanted to rule out neurological problems. I saw the neuro who took me off the meds my rhumi gave me(they weren't helpping anyway) and ordered emg's, a brain MRI and some more bloods. I"ve had so many blood tests its insane!
I see a second opinion Rhumi today so I'll get her take on things also. I really don't feel thins is fibromyalgia but I'm not the doctor lol
What worries me most is when I'm driving my legs will be so tight I have to take them off the peddals and stretch them because I can't stand the sensation and if I don't I'll get foot cramps.
Do these kinds of symptoms sound familiar to anyone?
I was posting in the myositis forum but they don't get much traffic in there.
But things continue to progress with my muscle weakness and fatigue. Over exursion causes them to tighten up so much that I can barely stand the sensation. This happens more in the afternnon after I've been working and moving around. And if I put forth too much effort my muscles will cramp like a charlie horse.
I tried exersizing but my muscles just began to burn and I gave up on that pretty quickly.
So the rhumi wanted to rule out neurological problems. I saw the neuro who took me off the meds my rhumi gave me(they weren't helpping anyway) and ordered emg's, a brain MRI and some more bloods. I"ve had so many blood tests its insane!
I see a second opinion Rhumi today so I'll get her take on things also. I really don't feel thins is fibromyalgia but I'm not the doctor lol
What worries me most is when I'm driving my legs will be so tight I have to take them off the peddals and stretch them because I can't stand the sensation and if I don't I'll get foot cramps.
Do these kinds of symptoms sound familiar to anyone?
I was posting in the myositis forum but they don't get much traffic in there.
hi Margot, I absolutly understand the round and round. Its so confusing to have so many symptoms in so many different parts of the body and not know whats wrong, never getting answeres so they can fix the problem.
This rhumi I saw seemed really thurough. I got alot of blood taken and she reallt went over symptoms asking alot of questions.
she mentioned three things that could be going on...something about my nerves misfiring(or something along those lines) genetic disorder or a metabolic issue. Truth be told i dont know what any of those things mean at this point so I'm going to wait the two weeks for the blood test and go from there.
she did say I had alot of symptoms of MS but that I dont look like someone with MS. I never even considered MS and still am not.
Still banking on lymes as they have fixes for that lol.
I just feel so horrible and am really sick of feeling sick.
waitng is the worst part.
I hope you get some answeres also margot. I just got a procedure for my bladder about a month 1/2 ago and it really improved my pain and urgency. REALLY improved them. I'll be going in for a laprascopy this month also to improve my endo. Maybe live in alot less pain with that also1:) and if the rhumi can find whats going on with the rest of my body and fix that I may just remember what it feels like to feel physically 'normal'.
ever feel like your bodies completely deteriorating and betraying you???
Be well and happy Holidays:)
This rhumi I saw seemed really thurough. I got alot of blood taken and she reallt went over symptoms asking alot of questions.
she mentioned three things that could be going on...something about my nerves misfiring(or something along those lines) genetic disorder or a metabolic issue. Truth be told i dont know what any of those things mean at this point so I'm going to wait the two weeks for the blood test and go from there.
she did say I had alot of symptoms of MS but that I dont look like someone with MS. I never even considered MS and still am not.
Still banking on lymes as they have fixes for that lol.
I just feel so horrible and am really sick of feeling sick.
waitng is the worst part.
I hope you get some answeres also margot. I just got a procedure for my bladder about a month 1/2 ago and it really improved my pain and urgency. REALLY improved them. I'll be going in for a laprascopy this month also to improve my endo. Maybe live in alot less pain with that also1:) and if the rhumi can find whats going on with the rest of my body and fix that I may just remember what it feels like to feel physically 'normal'.
ever feel like your bodies completely deteriorating and betraying you???
Be well and happy Holidays:)
Oh, I have been round and round with my Endo doctor on the thyroid issues but my tests come out normal and I have nodules that have been biopsies 4 times.I have ongoing GI problems I suffer with more and more and no answers after numerous tests.
Years ago, was diagnosed with Interstitial Cystitis and my Urologist gave me DMSO infusion treatments and that worked!!
Years ago, was diagnosed with Interstitial Cystitis and my Urologist gave me DMSO infusion treatments and that worked!!
I had no idea that you have to test specifically for certain things when it came to the thyroid. I just figured if they checked the thyroid and its okay then thats out of the mix but that might change the way they test if I bring it up since they only do the basic.
Whats made this more difficult is that i dont know my family history on both sides and unfortunitly can't get it. Thats always a blind spot for the doctors when it comes to what might be a contributing factor with these health problems.
I have a general question...was anyone sick as young child or teenager? I'm wondering because I've had some sort of medical issue since I was young. Started with constant eye infections and styes and I'd have to see an eye specialist every few weeks and then continued with generally not feeling well. But it was always, nothings wrong, your fine. So I've grown up thinking its all in my head. i even went as far as visiting a therapist and psychiatrist in my 20's who convinced me i wasn"t crazy and had to take these things seriously and go to the dr.
I was brought up to never question a DR. if they say your fine, trust them. So I have problems being my own advocate. Because honestly, some of these drs make you feel a little looney when they can't find anything wrong right away.
I just want to say, I know theres something wrong and we need to find it, and I don't care what it takes.
okay, im rambling and should be in bed for yet another blissful day at work lol. weekends should be reserved for rest!
thanks so much for your support and i will get you updated:)
Whats made this more difficult is that i dont know my family history on both sides and unfortunitly can't get it. Thats always a blind spot for the doctors when it comes to what might be a contributing factor with these health problems.
I have a general question...was anyone sick as young child or teenager? I'm wondering because I've had some sort of medical issue since I was young. Started with constant eye infections and styes and I'd have to see an eye specialist every few weeks and then continued with generally not feeling well. But it was always, nothings wrong, your fine. So I've grown up thinking its all in my head. i even went as far as visiting a therapist and psychiatrist in my 20's who convinced me i wasn"t crazy and had to take these things seriously and go to the dr.
I was brought up to never question a DR. if they say your fine, trust them. So I have problems being my own advocate. Because honestly, some of these drs make you feel a little looney when they can't find anything wrong right away.
I just want to say, I know theres something wrong and we need to find it, and I don't care what it takes.
okay, im rambling and should be in bed for yet another blissful day at work lol. weekends should be reserved for rest!
thanks so much for your support and i will get you updated:)
If you were tested for TSH, 3 and T4 the results do not indicate thyroid function at the cellular level, as they reflect only the serum levels.
You need Free T3, Free T4 and Reverse T4 to rule thyroid dysfunction out.
Please disregard this if you have already been tested for these.
Lyme disease testing returns too many false negatives. The golden standard is IGeneX Labs and only through an LLMD (Lyme Literate Medical Doctor) as most conventional medical doctors adhere to the IDSA protocols and probably won't deviating from this and risk getting reprimanded.
Likely the inability of the body to process dead cells in the bladder efficiently, specially when there's urothelium & bladder wall permeability,and fluids with those cells get released in the blood stream, the fluid containing these cells or mast cells, may stimulate the immune system to regard the bladder as foreign and attack it (autoimmune response).
Best of luck with the rheumatologist. Tissue magnesium is not an established test though, so you may have to insist, or just get your own done where they do tissue or hair analysis for minerals.
Keep us posted.
Niko
You need Free T3, Free T4 and Reverse T4 to rule thyroid dysfunction out.
Please disregard this if you have already been tested for these.
Lyme disease testing returns too many false negatives. The golden standard is IGeneX Labs and only through an LLMD (Lyme Literate Medical Doctor) as most conventional medical doctors adhere to the IDSA protocols and probably won't deviating from this and risk getting reprimanded.
Likely the inability of the body to process dead cells in the bladder efficiently, specially when there's urothelium & bladder wall permeability,and fluids with those cells get released in the blood stream, the fluid containing these cells or mast cells, may stimulate the immune system to regard the bladder as foreign and attack it (autoimmune response).
Best of luck with the rheumatologist. Tissue magnesium is not an established test though, so you may have to insist, or just get your own done where they do tissue or hair analysis for minerals.
Keep us posted.
Niko
Thank you for your reply. I've had many MANY tests for my thyroid done. LOL That seems like the first "go to" when it comes to doctors (at least the doctors I've seen). Oh and lymes disease. Thyroid and lymes is what they jump to
I think I absolutely will stick with the rheumatologist until they say they can't help as after my research over the years I seem to have most symptoms of an autoimmune issue. And because diagnosis is so difficult I don't want to stop again like I did last time and loose so many years to not feeling well. They do also believe IC may be an autoimmune problem because the body seems to attack the bladder lining and if a new bladder is made out of the intestines the body continues to do the same thing to it.
But I will keep the thyroid and magnesium in my back pocket and mention them to the rhumi doc:)They may want to test me again for those things
Thank you thelightseeker:)
I think I absolutely will stick with the rheumatologist until they say they can't help as after my research over the years I seem to have most symptoms of an autoimmune issue. And because diagnosis is so difficult I don't want to stop again like I did last time and loose so many years to not feeling well. They do also believe IC may be an autoimmune problem because the body seems to attack the bladder lining and if a new bladder is made out of the intestines the body continues to do the same thing to it.
But I will keep the thyroid and magnesium in my back pocket and mention them to the rhumi doc:)They may want to test me again for those things
Thank you thelightseeker:)
Sorry in my previous post it should read:
Endocrinology usually does NOT recognize such imbalances until it becomes a crisis!
Endocrinology usually does NOT recognize such imbalances until it becomes a crisis!
Hi sosickoflC.
I read your post twice and your case seems more complex than what any one specialist (Rheumatologist, Endocrinologist, Neurologist or Urologist) can diagnose and treat effectively.
Calcinosis (calcium deposits under the skin) may be linked to low thyroid
and magnesium deficiency (tissue levels, not serum) as magnesium and calcium have to be in the correct ratio.
Magnesium and a lot of cellular energy (thyroid related) are required to pull calcium out of the cells.
Your past SVT could be associated with low tissue magnesium, as well.
Your elevated CPK may indicate a low level of T3 (Thyroid) as these 2 markers are in inverse relation, which (low T3) would not surprise me.
Low thyroid function can affect the bladder in connection to IC.
There's a possibility that you have an Ovary/Adrenal/Thyroid Axis Imbalance.
Estrogen dominance (over progesterone) promotes endometriosis, stimulates breast cysts, while chronic stress (hidden and/or experienced) and other factors lead to low adrenal function (adrenal fatigue), all consistent with your symptoms and conditions!
Unfortunately, conventional medical doctors may not be able to investigate
this at the root level, as it is not within the "established" protocol.
Endocrinology usually does recognize such imbalances until it becomes a crisis!
And for some reason the "established" tests often fail to yield accurate results, leaving the suffering patients undiagnosed, underdiagnosed or even
worse, misdiagnosed when the symptoms match other conditions!
If you need any details please let me know, as yours would be a challenging case, from what I suspect.
This is not intended as a substitute for medical advice.
Wishing you well.
Niko
I read your post twice and your case seems more complex than what any one specialist (Rheumatologist, Endocrinologist, Neurologist or Urologist) can diagnose and treat effectively.
Calcinosis (calcium deposits under the skin) may be linked to low thyroid
and magnesium deficiency (tissue levels, not serum) as magnesium and calcium have to be in the correct ratio.
Magnesium and a lot of cellular energy (thyroid related) are required to pull calcium out of the cells.
Your past SVT could be associated with low tissue magnesium, as well.
Your elevated CPK may indicate a low level of T3 (Thyroid) as these 2 markers are in inverse relation, which (low T3) would not surprise me.
Low thyroid function can affect the bladder in connection to IC.
There's a possibility that you have an Ovary/Adrenal/Thyroid Axis Imbalance.
Estrogen dominance (over progesterone) promotes endometriosis, stimulates breast cysts, while chronic stress (hidden and/or experienced) and other factors lead to low adrenal function (adrenal fatigue), all consistent with your symptoms and conditions!
Unfortunately, conventional medical doctors may not be able to investigate
this at the root level, as it is not within the "established" protocol.
Endocrinology usually does recognize such imbalances until it becomes a crisis!
And for some reason the "established" tests often fail to yield accurate results, leaving the suffering patients undiagnosed, underdiagnosed or even
worse, misdiagnosed when the symptoms match other conditions!
If you need any details please let me know, as yours would be a challenging case, from what I suspect.
This is not intended as a substitute for medical advice.
Wishing you well.
Niko
by chance i called my primary in hopes she could at least start some blood work because i couldnt get in to see my rhumi until mid jan. She asked if i wanted to see theres next thursday....YES please!!! so I've taken a few steps forward, thanks carolanivey for your response which made me want to get on this sooner!
thanks so much for your reply. Yes, your absolutly right I've put myself way behind ignoring my symptoms. I regret that so much. I know if I'm going to feel better I cant just turn my back this time and hope it goes away.
Today at work i began to feel so weak and tiered I had to have someone cover the second half of my shift, I just couldnt do it. My job involves alot of physical activity and its become difficult to get through the day. Even with the sit down part of my work I find I'm too tired and weak to really give it the attention it needs. Even with 8 hrs of sleep, its just not enough rest. Even during my medical "break" i tried exersizing but had to stop as I kept getting injury after injury. I loved zumba!
I looked through the trackers and started the one for autoimmune disorders, so I'm hoping when the time comes I can print that out for the doctor or at least as a referance when I go in.
It's just so darn frustrating that diagnosis is so difficult.
I'll try to make things as stress free and restful as I can until I see the rhumi.
It helps there are people who understand. This time I won't turn back in getting to the bottom of this.
Thanks again
Today at work i began to feel so weak and tiered I had to have someone cover the second half of my shift, I just couldnt do it. My job involves alot of physical activity and its become difficult to get through the day. Even with the sit down part of my work I find I'm too tired and weak to really give it the attention it needs. Even with 8 hrs of sleep, its just not enough rest. Even during my medical "break" i tried exersizing but had to stop as I kept getting injury after injury. I loved zumba!
I looked through the trackers and started the one for autoimmune disorders, so I'm hoping when the time comes I can print that out for the doctor or at least as a referance when I go in.
It's just so darn frustrating that diagnosis is so difficult.
I'll try to make things as stress free and restful as I can until I see the rhumi.
It helps there are people who understand. This time I won't turn back in getting to the bottom of this.
Thanks again
I'm glad you have an appointment to return to the rheumatologist. I'm sure you've figured this out, but you didn't do yourself any good by ignoring things hoping they'd go away. :( Now you're behind the eight ball in terms of getting on top of your symptoms with proper treatment.
It's true that autoimmune disorders can be puzzling and beastly hard to pin down with a diagnosis, even for the experts. Finding the right treatment can be a frustrating process. A good rheumatologist will treat you based on a broad range of symptoms, not just what numbers on blood work results say.
The hard knots under your skin often occur along with autoimmune disorders. I have a few, too. No one seems to know exactly what causes them or how to get rid of them.
I'm not sure who else can help you at this point. Maybe a pain management clinic? Until you can be seen by the rheumie, self-care should be your top priority. Good nutrition and enough rest is critical. This could mean saying no to activities and obligations that drain your precious energy.
While you're waiting for your rheumie appointment, start a journal to chronicle your symptoms. This can be a simple stick figure of yourself with circles around areas of the worst pain. Also include a 1-10 number for pain level and fatigue level. In addition, briefly not what you ate, what over the counter medications you took, and what your activity level was that day. Over time you may notice certain activities or even foods make you feel worse. Information like this can be extremely valuable to your rheumie, so take the journal with you when you go.
Good luck! I hope you feel better soon.
It's true that autoimmune disorders can be puzzling and beastly hard to pin down with a diagnosis, even for the experts. Finding the right treatment can be a frustrating process. A good rheumatologist will treat you based on a broad range of symptoms, not just what numbers on blood work results say.
The hard knots under your skin often occur along with autoimmune disorders. I have a few, too. No one seems to know exactly what causes them or how to get rid of them.
I'm not sure who else can help you at this point. Maybe a pain management clinic? Until you can be seen by the rheumie, self-care should be your top priority. Good nutrition and enough rest is critical. This could mean saying no to activities and obligations that drain your precious energy.
While you're waiting for your rheumie appointment, start a journal to chronicle your symptoms. This can be a simple stick figure of yourself with circles around areas of the worst pain. Also include a 1-10 number for pain level and fatigue level. In addition, briefly not what you ate, what over the counter medications you took, and what your activity level was that day. Over time you may notice certain activities or even foods make you feel worse. Information like this can be extremely valuable to your rheumie, so take the journal with you when you go.
Good luck! I hope you feel better soon.
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