neurological disease
This blood test can possibly diagnose nerve damage, autonomic dysautonomia and peripheral neuropathy.
You have 2 people now that took Accutane test positive.
Lets look at the stats.

Autonomic neuropathy occurs when the nerves that control involuntary bodily functions are damaged. This may affect blood pressure, temperature control, digestion, bladder function and even sexual function.

Ganglionic Acetylcholine Receptor Autoantibody

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3764484/
From Mayo Clinic.
Of 15 000 patients tested on a service basis, 1% were seropositive

we have observed that this Ab has broader oncological and neurological associations than originally recognized.

This was the category I fell into or tier. You can see the side effects might not be immune in nature. (Example Diabetes) They could be as well though.
my valuewas 0.07

Patients With Low 3-AChR Ab Values

Low values were those between 0.03 and 0.09 nmol/L. The median antibody value in this group of 58 patients (37% of the total) was 0.06 nmol/L. Thirty-one (54%) had either a nonimmune-mediated neurological disorder (22 patients) or a nonneurological disorder (9 patients). Twelve (39%) had monoclonal (2 patients) or polyclonal hypergammaglobulinemia (10 patients).

Peripheral neuropathy was the predominant neurological manifestation in 13 patients (22%). Six (10%) had dysautonomia, 3 with pandysautonomia and 3 with limited dysautonomia. Subacute neuropsychiatric presentations were documented in 3 patients, 1 with limbic encephalitis with coexisting ANNA-1 autoantibody and 2 with subacute memory loss and depression. Three patients had myasthenia gravis and were seropositive for muscle AChRbinding Ab (range, 2.5638.9 nmol/L). Two patients had an inflammatory demyelinating central nervous system disorder, 1 with neuromyelitis optica and 1 with multiple sclerosis.

It is noteworthy that 21% of seropositive patients had symptoms of dysautonomia

Peripheral neuropathy was the most common accompaniment of 3-AChR Ab, documented in 28% of patients. Most had length-dependent sensory or sensorimotor polyneuropathies, but demyelinating neuropathies and disorders of nerve root, dorsal root ganglion, and cranial nerves were also encountered.

Central nervous system disorders of subacute onset were encountered in 20% of seropositive patients and mainly affected cortical and subcortical structures. Most of these patients had neuropsychiatric manifestations

The 3-AChR subunit is not confined to autonomic ganglia. It is found throughout the nervous system including the sensory dorsal root ganglia, trigeminal ganglia, and in rat^19,20and mouse brains.¹⁹

5 hours ago, guitarman01 said:

neurological disease
This blood test can possibly diagnose nerve damage, autonomic dysautonomia and peripheral neuropathy.
You have 2 people now that took Accutane test positive.
Lets look at the stats.

Autonomic neuropathy occurs when the nerves that control involuntary bodily functions are damaged. This may affect blood pressure, temperature control, digestion, bladder function and even sexual function.

Ganglionic Acetylcholine Receptor Autoantibody

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3764484/
From Mayo Clinic.
Of 15 000 patients tested on a service basis, 1% were seropositive

we have observed that this Ab has broader oncological and neurological associations than originally recognized.

This was the category I fell into or tier. You can see the side effects might not be immune in nature. (Example Diabetes) They could be as well though.
my valuewas 0.07

Patients With Low 3-AChR Ab Values

Low values were those between 0.03 and 0.09 nmol/L. The median antibody value in this group of 58 patients (37% of the total) was 0.06 nmol/L. Thirty-one (54%) had either a nonimmune-mediated neurological disorder (22 patients) or a nonneurological disorder (9 patients). Twelve (39%) had monoclonal (2 patients) or polyclonal hypergammaglobulinemia (10 patients).

Peripheral neuropathy was the predominant neurological manifestation in 13 patients (22%). Six (10%) had dysautonomia, 3 with pandysautonomia and 3 with limited dysautonomia. Subacute neuropsychiatric presentations were documented in 3 patients, 1 with limbic encephalitis with coexisting ANNA-1 autoantibody and 2 with subacute memory loss and depression. Three patients had myasthenia gravis and were seropositive for muscle AChRbinding Ab (range, 2.5638.9 nmol/L). Two patients had an inflammatory demyelinating central nervous system disorder, 1 with neuromyelitis optica and 1 with multiple sclerosis.

It is noteworthy that 21% of seropositive patients had symptoms of dysautonomia

Peripheral neuropathy was the most common accompaniment of 3-AChR Ab, documented in 28% of patients. Most had length-dependent sensory or sensorimotor polyneuropathies, but demyelinating neuropathies and disorders of nerve root, dorsal root ganglion, and cranial nerves were also encountered.

Central nervous system disorders of subacute onset were encountered in 20% of seropositive patients and mainly affected cortical and subcortical structures. Most of these patients had neuropsychiatric manifestations

The 3-AChR subunit is not confined to autonomic ganglia. It is found throughout the nervous system including the sensory dorsal root ganglia, trigeminal ganglia, and in rat^19,20and mouse brains.¹⁹

This test is so hard to actually get though. Ive hounded my doctors for it, to no avail. Is it available to purchase elsewhere?

Also an interesting little bit about the hypergammaglobulinemia listed there. I had an abnormal spike on my electrophoresis.

Unfortunately this test is rather new and doctors that have been in practice for awhile might not be that familiar with it. It was added to Mayo's test catalog in 2005 I want to say, and just recently popped back up on Quest's test catalog.
I drove a hour and a half to my nearest university with my test result (after requesting this test from my local primary Dr by phone, she approved it but had no idea what I had ordered) and I got a rather older neurologist that didnt seem like he was familiar at all with this antibody.

People are going to need some research papers to back upclaims, meaning not whats coming out of your mouth to convince some of these doctors.

You see the rarity of this antibody and if one more person were to test positive I wouldn't call that a coincidence. Are you looking for specific treatment for this with immune suppression or steroids? (steroid side effects, bone loss, easy bruising = we might already be dealing with this.)
Im not. Im looking at building a case.

37 minutes ago, guitarman01 said:

Unfortunately this test is rather new and doctors that have been in practice for awhile might not be that familiar with it. It was added to Mayo's test catalog in 2005 I want to say, and just recently popped back up on Quest's test catalog.
I drove a hour and a half to my nearest university with my test result (after requesting this test from my local primary Dr by phone, she approved it but had no idea what I had ordered) and I got a rather older neurologist that didnt seem like he was familiar at all with this antibody.

People are going to need some research papers to back upclaims, meaning not whats coming out of your mouth to convince some of these doctors.

You see the rarity of this antibody and if one more person were to test positive I wouldn't call that a coincidence. Are you looking for specific treatment for this with immune suppression or steroids? (steroid side effects, bone loss, easy bruising = we might already be dealing with this.)
Im not. Im looking at building a case.

Treatment is most important to me right now. I could muster up the energy to fight if I was feeling better. Plain and simple.

On 3/23/2018 at 12:44 AM, Colinboko said:

On 3/23/2018 at 12:21 AM, flynn said:

 

If it™s a 5AR problem then why do some of us have normal DHT levels?

If you have time, please read my post on this. I know its long but I explain this in far more depth. Or just skim through it - [removed]

Serum levels of DHT are irrelevant for several reasons. Firstly, the you can have high serum levels of DHT but not high levels in the brain due to the blood brain barrier. Studies have shown that DHT is not readily absorbed by the blood brain barrier compared to normal testosterone. 

The activity of 5AR in neurons in the brain is likely highly regulated. So serum levels of hormones tell you nothing, its only the activity of these hormones by 5AR in the neurons that has a big impact on your neurology and brain activity. 

Additionally, neurons are the only cells in the body which do not renew. Thus its possible that accutane changes gene expression in peripheral cells in the body, but these cells changes over time as they divide, replicate and are renewed. As such you may get a normal production of hormones in the body as shown by blood tests. But changes to gene expression in neurons may persist indefinitely as these cells don't divide and replicate over time. 

On 3/23/2018 at 5:10 AM, guitarman01 said:

BUT.
fMRI blood oxygen level-dependent responses to erotic and nonerotic stimuli revealed abnormal function in brain circuitry 

Also.
It is possible that mood and cognitive complaints may be related to reduced neurosteroid production due to persistent local inhibition of SRD5A activity in specific brain regions (42), which was not reflected in changes in peripheral DHT levels.

This is a great post. I feel that its the this persistent local inhibition of SRD5A which is the problem. 

I had some thoughts about PFS as well. If you suppress 5AR for long periods of time (I know this doesn't make much sense in the light of people who only took one pill, if this is even true). The body may try to make up for this by increasing the expression of 5AR. perhaps when you stop taking FIN. The rapid changes which may lead to an overstimulation of 5AR related products may activate negative feedback loop in your body. Telling you body to stop expressing 5AR as it fears that there will be an overproduction of 5AR products. This could explain why some people only crash several weeks after stopping FIN. Anyway this is just a thought I've had now. Will need to think about this in more depth.

On 3/24/2018 at 2:31 PM, macleod said:

I believe the chemotherapy adjunct medication Isotretinoin has the potential to insult the PNS, as it is more susceptible to chemical injury than other regions (CNS or the brain directly), especially in those of developmental ages. As a result, the Autonomic nervous system can be affected. The PSNS for instance controls many regulations throughout the body, such as glandular function. Isotretinoin is marketed on its ability to shrink sebaceous glands, which are exocrine glands. I question how a chemical is able to discern between exocrine/endocrine, throughout the body, as its "effect" takes place. The drug has been remarked as having the ability to "make cancerous cells appear normal" in medical journals.

I urge people to look into their symptoms as it relates to the nervous system. Here is a photo, now recall our pattern of symptom commonalities in the a.reproductive region b. digestive region c. neurological region

I don't think it's far-fetched at all to make a PNS>ANS>Limbic System pathway of chemical toxicity, I think someone who actually knows about this stuff would say it's feasible, and if not, I'd like to hear why not.

I think people should focus their effort on a chemotherapy toxicity induced dysautonomia.

It would be great if you could post this on the theories of PAS thread, every new theory is very welcomed and valuable - [removed]

On 3/24/2018 at 4:26 PM, Colinboko said:

On 3/24/2018 at 8:31 AM, macleod said:

 

I totally see what youre getting at here, but how come other forms of chemo dont leave patients riddled with this nasty disease like we are? What is so different about iso? And how would one treat chemo toxicity? I mean we would obviously just have to treat symptoms and find out what that chemo triggered right?

This is a great point. We do regard Isotretinoin/Accutane as a chemo drug which it is. But we must remember, that when it's used for chemo, It's used in much higher dosages (at least I think it is). I also imagine there are far stronger chemo drugs out there which don't produce these long lasting side effects. If the chemo nature of accutane is the problem. I would expect to see people who have taken other chemo drugs particularly stronger chemo drugs report symptoms similar to PAS persisting may years after stopping treatment. If these patients don't exist, I think there is less chance that the effects are related to the chemo nature of Accutane

Microcirculatorydisorders.
the potential of arresting and perhaps reversing the progression of neuronal destruction.

Neuropathy | Cleveland Clinic

4 hours ago, flynn said:

I also imagine there are far stronger chemo drugs out there which don't produce these long lasting side effects.

Long-term issues from exposure to chemotherapy drugs has reached the attention of the medical community. One of the biggest ones that comes to mind is post-chemotherapy cognitive impairment, or "chemo brain." It is thought that the drugs are causing CNS damage, specifically by both degrading the myelin sheath AND impede restoration mechanisms. In other cases, it is thought that hormonal therapy alone (e.g.,Nolvadex for female breast cancer) can cause long-term mental issues. To me, this is telling because it shows that a therapy which deprives normal hormone production for a period of time can have lasting consequences. This could be potentially relevant to Accutane (since it lowers so many different hormones) if we are extrapolating this finding in the broadest sense possible. But even if we aren't, it's still interesting to note there a few other potential explanation for how chemo drugs cause lasting mental disturbances.

4 hours ago, flynn said:

I would expect to see people who have taken other chemo drugs particularly stronger chemo drugs report symptoms similar to PAS persisting may years after stopping treatment.

On 3/24/2018 at 12:26 PM, Colinboko said:

I totally see what youre getting at here, but how come other forms of chemo dont leave patients riddled with this nasty disease like we are?

Oh, other chemo drugs are absolutely well-documented to leave long-term side effects. Possible acceleration of aging by adjuvant chemotherapy: a cause of early onset frailty?

"With a growing number of long-term survivors, we are only now able to define the delayed implications of adjuvant chemotherapy. These long-term side effects include acceleration of neurocognitive decline, musculoskeletal complications such as early onset osteoporosis, premature skin and ocular changes and the most common long-term complaint; mild to profound fatigue. This complex of problems is suggestive of early onset frailty. This paper explores various potential mechanisms of aging including accumulation of free-radical damage, accumulation of DNA damage, telomere shortening with accompanying decline in telomerase activity and finally a decline in neuroendocrine/immune function."

Is that paragraph referring to Accutane survivors?! No, but instead cancer survivors who were on chemo. And what's most telling are the explanations for these long-term chemo related complaints. Many of the mechanisms thought to be responsible for the pro-aging effects of chemo drugs have direct parallels to how Accutane works in the body. I don't usually jump onto the band-wagon of hyped words like "toxin" or "poison."." But I have always called Accutane a chemo drug because that is literally how it pharmacologically behaves in the body. It causes premature aging by telomerase downregulation, hormone suppression, and beyond.

Here is more evidence that chemo drugs cause long-term issues (Aging and Risk of Severe, Disabling, Life-Threatening, and Fatal Events in the Childhood Cancer Survivor Study):

By age 50 years, 50% of survivors of childhood cancer will have experienced severe, disabling, or life-threatening morbidity or death, most commonly as a result of cardiovascular, pulmonary, hepatic, renal, and gonadal dysfunction, along with the development of subsequent malignant neoplasms. (Discussion section)

So yes, chemo drugs absolutely are associated with chronic illnesses and general lower quality of life. The medical community acknowledges this when it comes to chemo drugs as a general concept. But that still makes me feel vindicated given the fact so many different pieces of research have demonstrated how Accutane works, and it looks exactly like a chemo drug. In terms of the dosage of Accutane affecting the severity of its chemo effects. fair point, but even run-of-the-mill vitamin A supplementation is associated with increased health complaints and early death. Furthermore, an Accutane prescription is essentially a (form of) vitamin A overodose if the dose is high enough to dry the skin and clear acne. We're all going to have differences in our tolerances for whatever dose we're prescribed, and there are also differences in how the drug is metabolized from person-to-person as well. So although dosage is an important consideration, so is genetics and other individual considerations.

Theres no real drugs per say for combatting Chemo side effects are there??

Im currently on:

Co Q10
Vit C
B Vitamins

Yesterday I finally picked up Acetyl L Carnitine....it reads very promising for us tane victims in view of cognitive function but after 20 years its asking a lot to expect a supplement to have any huge effect.....hence why I asked about a drug to help that would be stronger.

Other than that my cognitive function is at a real low point.....I dont know what to do or who to see any more.....

@guitarman01
This might be interesting to you, it's a study focusing on vascular aging, its affect on disease and aging, and correction through the NAD+ booster nicotinamide mononucleotide (NMN).
I don't know if this pathway is very implicated in the vascular remodeling you have talked about in us post-tane people, but there might be some benefit in supplementation.
[Edited link out]

MRI didn't show any pituitary tumour, or inflammation apparently. Doc couldnt account for the pressure behind my eye and stated I had perfectly normal scans.

Will take scans to another neuro to be sure.

Next up is ear, throat and nose specialist..

25 minutes ago, Iamme. said:

MRI didn't show any pituitary tumour, or inflammation apparently. Doc couldnt account for the pressure behind my eye and stated I had perfectly normal scans.

Will take scans to another neuro to be sure.

Next up is ear, throat and nose specialist..

My ENT found my left thyroarytenoid muscle not adducting correctly. The muscle seemed to be wasting. Hence my vocal problems. Just got to find the stuff that IS visible and use it to continue testing. Dont let doctors tell you your fine.

Yep and on that, if youre still saying to your Dr or a specialist you were on the Acne drug Roaccutane you need to stop.

You were on the Chemo drug Roaccutane - FACT!!!! And thats how you need to start wording it.

It is absolute bullshit that was never said to us when being prescribed this poison, I mean is there anyone on here who was honestly told they were about to start on a Chemo drug???

If we ever have our day in court....

Neuroactive Steroids: Receptor Interactions and Responses

When they are below the normal, NSs could have a part in development of depression, neuro-inflammation, multiple sclerosis, experimental autoimmune encephalitis, epilepsy, and schizophrenia. On the other hand, stress and attention deficit disorder could occur during excessive level. Overall, NASs are very important molecules with major neuropsychiatric activity.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5581316/
@flynn

6 hours ago, Frage said:

This might be interesting to you, it's a study focusing on vascular aging,

This is what im looking at right now.

to improve blood perfusion and ameliorate hypoxia for the prevention and/or treatment of chronic venous insufficiencies and consequent diverse complications such as venous and lymphatic oedema, melanization, paper - money skin, desquamation, restless leg syndrome, muscle cramps, purpuric petechiae, spider - web phlebomegaly, heaviness of legs, paresthesiae and lower limb nerve pain, pooling of blood in inferior limbs and reduced venous return, venous stasis, orthostatic intolerance, thrombophlebitis and thrombus formation in veins and embolism thereof resulting in cardio pulmonary vascular events. The principle extends similarly through microcirculatory dysfunction in other organs also such as lung, heart, liver, brain, kidney retina, pancreas, testis, rectum, spinal cord, muscles, sympathetic and parasympathetic ganglia, and nerves

4 hours ago, Colinboko said:

4 hours ago, Iamme. said:

MRI didn't show any pituitary tumour, or inflammation apparently. Doc couldnt account for the pressure behind my eye and stated I had perfectly normal scans.

Will take scans to another neuro to be sure.

Next up is ear, throat and nose specialist..

My ENT found my left thyroarytenoid muscle not adducting correctly. The muscle seemed to be wasting. Hence my vocal problems. Just got to find the stuff that IS visible and use it to continue testing. Dont let doctors tell you your fine.

Yep, no intention of accepting their outcome. I mostly gave up on them years ago, they just serve the purpose of providing the necessary tests.

On 3/28/2018 at 2:15 AM, ACCUiTy_drANE said:

So yes, chemo drugs absolutely are associated with chronic illnesses and general lower quality of life. The medical community acknowledges this when it comes to chemo drugs as a general concept. But that still makes me feel vindicated given the fact so many different pieces of research have demonstrated how Accutane works, and it looks exactly like a chemo drug. In terms of the dosage of Accutane affecting the severity of its chemo effects. fair point, but even run-of-the-mill vitamin A supplementation is associated with increased health complaints and early death. Furthermore, an Accutane prescription is essentially a (form of) vitamin A overodose if the dose is high enough to dry the skin and clear acne. We're all going to have differences in our tolerances for whatever dose we're prescribed, and there are also differences in how the drug is metabolized from person-to-person as well. So although dosage is an important consideration, so is genetics and other individual considerations.

Yeah I agree with this completely and I know chemodrugs are associated with long term side effects etc. chemo drugs are very powerful. But remember that people on chemo drugs generally take far stronger chemo drugs than accutane and I'd assume (could be wrong here) that they take them for longer periods of time.

My question is, are they associated with rare PAS (largely unique to accutane and a few other drugs) side effects such as persistent sexual dysfunction? This side effect is of the most interest to me. If you find any, please link me as I would be very interested.

On 3/28/2018 at 2:13 AM, guitarman01 said:

@flynn

It could be as simple as what we eat and altered metabolism.
Neurosteroid - Wikipedia

Yes but I find this unlikely, I think changes in neurosteroids are far more likely to be caused by changes in enzymes involved in production of neurosteroids such as 5AR rather than just diet. If it was just diet its likely we would have seen far more stories of recoveries over time. but this is all great info man.

@flynn
Im looking at what could be possible systemically as well. We've seen enough blood tests to know this might not be isolated to just neurosteroids when it comes to hormones.

Cholesterol Is the Precursor to All Steroid Hormones

Cholesterolis the precursor of the five major classes of steroidhormones: progestogens, glucocorticoids, mineralocorticoids, androgens, and estrogens (Figure 26.24). Thesehormonesare powerful signal molecules that regulate a host of organismal functions.

Cholesterol is the precursor to a hormone called pregnenolone, which has important functions itself, but is also the precursor to all other steroid hormones.

Pregnenolone is converted to progesterone, a sex hormone, which in turn is converted into cortisol, which regulates inflammation and blood sugar, aldosterone, which regulates mineral balance and blood pressure, or testosterone, a type of sex hormone referred to as an androgen, which regulates libido, muscle mass, and plays other roles.

Cholesterol is a precursor for other important steroid molecules:
bile saltsand vitamin D.

I just posted some info not too long ago how both Accutane and Fin were shown they could alter cholesterol metabolism. How do we know this possible change isn't long term?

At this stage it probably is long term.

i do the best to try and lower my cholesterol but its not easy.

At this stage I refuse to go on medication for it, Ill do everything I can to lower it naturally.

Does anyone else haveErythromelalgia? Its a vasomotor dysfunction where feet and hands swell and their veins dilate in excess resulting in red engorged painful extremities. I was diagnosed with it a month or so ago. Relates to this vaso-circuitrydiscussion?
https://www.google.com/search?q=erythromelalgia&source=lnms&tbm=isch&sa=X&ved=0ahUKEwjV_aryt5TaAhWH0YMKHT_UBpoQ_AUICigB&biw=1366&bih=662

@guitarman01Can you post your AChR Ganglionic results again?

Im calling my neurologist today with hopes that since Im insured by Quest diagnostics that she can just test me for shits and giggles.

Is this the correct test?

http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=93881&labCode=AMD

How are you going though with that last test you had done? Where they actually concluded something, what are you taking for it?

14 minutes ago, TrueJustice said:

How are you going though with that last test you had done? Where they actually concluded something, what are you taking for it?

What do you mean? The sed rate? As far as my proteinuria, they just monitor it every six months for now. Actually going to get a urinalysis tomorrow

The blood flow test, didnt you get a result.
sticky blood or something to that effect?

Also what are your thoughts on chemo brain?
Do you think you might have it?

Im currently thinking bingo thats what I have which makes me think why bother with anymore tests. You and I have similar issues, one of the biggest being fatigue- is that not easily explained through chemo brain?

Just putting it out there before we skip over it and try to look elsewhere....

1 hour ago, TrueJustice said:

The blood flow test, didnt you get a result.
sticky blood or something to that effect?

Also what are your thoughts on chemo brain?
Do you think you might have it?

Im currently thinking bingo thats what I have which makes me think why bother with anymore tests. You and I have similar issues, one of the biggest being fatigue- is that not easily explained through chemo brain?

Just putting it out there before we skip over it and try to look elsewhere....

There is no negative for sed rate, but the lowest is 0 and I had a 2..
It doesnt really diagnose anything, just that my blood is super viscous. Which Im assuming is from the amount of proteins I have floating around.
I dont believe in the chemo brain theory. Sorry to shoot you down, but I barely took Accutane. If 30 mg for a month is equivalent to chemo treatment then why doesnt everyone experience it? A lot of my symptoms also go way past chemo brain. Like my vocal cord problem and the whole never catching a cold thing

Yeah thats ok, I jump from one theory to another anyway but Im slowly giving up on the gut and liver - theres only so much I can do.

For me I think I could have chemo brain, I certainly have all the symptoms......

I also think its possible to have multiple things going on, I too dont get get colds but that doesnt mean I dont have chemo brain with whatever else is at play with that.

Anyway well just have to keep plugging away at different things and continue to gather all the info.