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On 11/28/2018 at 4:00 PM, niedlaizo said:How many will stop from taking isotretinoin after this single article? Let me say it. Zero! None! What I am trying to say is that, I am visting doctors / specialists few times in every week. And you know what they are saying? They say that this substance is not really dangerous at all. So it will not help anyone. I gave myself a month and then I am going to sue my doctor. I do not believe it will help to anybody but maybe other doctors will hear about it and will stop lie about this substance. My doctor almost cried when she heard about my problems but is it help me or other patients? Not at all.
Where are you from? have you reported your side effects andare you interested in raising awareness about this drug?
I know someone who is considering getting a group together to sue - he is trying to gauge interest and will be setting up a website soon.
On 5/11/2017 at 7:51 PM, ACCUiTy_drANE said:You are absolutely right. Here is what I sent. Feel free to steal it completely for emailing purposes, edit it down, make changes, or send it to other authority figures or researchers. Alternatively, do it better than me and write your own email with much more emotional appeal:
To whom it may concern:
It is my understanding that a review will soon be taking place regarding the safety of the pharmaceutical drug Accutane. As a resident of the U.S. who was personally negatively affected by the drug (among many), I would like to provide research and facts to your committee so that this issue can be discussed in the most intelligent way possible.
Accutane's Relationship to Psychiatric Issues:- Taking into account FDA's list of top 10 drugs associated with depression, Accutane is the only non-psychoactive drug on that list.
- From 1989 to 2003, Keith Altman, Adverse Drug Reaction Statistics Analyst, found that more patient suicides were associated with Accutane than Prozac. This is an interesting finding since Prozac is a drug given to actual depressed patients.
- One study found that 37% of dermatologists believe Accutane can cause psychiatric issues in patients.
- Eight years after approval, the FDA actively considered removing Accutane from the market due to its ability to cause birth defect, as well as evidence that it causes psychiatric problems in some. Source: United States Congress House of Representatives Committee on Government Reform
Pharmacological Effects of Accutane:
- Patients taking Accutane were found to have decreased bloodflow in the orbitofrontal cortex, a region of the brain implicated in depression.
- Patients taking Accutane were found to have increased levels of homocysteine, which is associated with things like aggression and depression.
- The Norwegian Medicines Agency has documented lasting neurological symptoms in patients who have taken Accutane. Testing of the brain revealed organic brain damage and reduced blood flow to the frontal lobes.
- In mice, administration of Accutane is may be associated with cellular loss in the hippocampus of the brain. The hippocampus is associated with learning, memory, and depression.
- Another study in mice found that Accutane disrupted the ability for mice to learn a spatial radial maze.
Lastly on the topic of psychiatric health, I would like to point out that Accutane was originally used as a chemotherapy drug. Clear skin was simply noted as a side effect of the original purpose (cancer-killing). Like any other chemotherapy drug, Accutane's effects are not specific to one region of the body. The following quote explains how Accutane does not only target skin glands. It targets many other systems in the body. :
"We have to appreciate that isotretinoin does not œexclusively targets apoptosis of the sebaceous glands as proapoptotic drug effects have been observed in several unrelated cell systems and explain all adverse effects of isotretinoin and other retinoids. . . . strongly suggests that isotretinoin and its isomerization product ATRA induces upregulation of FoxO-signaling and exerts apoptotic effects in multiple cell types like the muscle, the bone and the brain."
Sexual Side Effects:Briefly, allow me to shift to the topic of sexual side effects. Health Canada recently issued a statement stating Accutane may be associated with sexual dysfunction in some. This is supported by patient reports, and some studies noting a decrease in a number of pituitary hormones in patients taking Accutane. It seems other health regulatory agencies have been slower to acknowledge this devastating effect. This is similar to what happened in 1997 when France added a warning that Accutane may be associated with suicide, and other regulatory agencies were unaware until some time later. I would be saddened to see a similar information gap occur between countries for the issue of sexual side effects.
My Broader Reason for this Letter:I convey all of this information because the issues of psychiatric and sexual health are very personal. In the case of sexual health, it appears many regulatory agencies have failed to warn patients at all of Accutane's potential to cause issues. In the case of psychiatric health, many warnings exist. However, that does not change the fact that many patients are left suffering after quitting the drug. The FDA does acknowledge that quitting the drug after incurring psychiatric issues may not be enough to resolve the issues, based on previous post-marketing research. This is serious because Accutane is often prescribed for acne that is moderate rather than severe. Going forward, as a private citizen of the U.S., I suggest one of two things: 1) Increased regulation on how and when this drug is prescribed. Perhaps it should only be used for severe nodular acne, as originally intended when it was marketed for acne. 2) Increased research into the pharmacological effects of Accutane so that we can understand how and how some people develop persistent problems. In the past, UK MCA and FDA MedWatch estimated that only 10-15% of serious adverse drug reactions are ever reported. This is why it is important to act whenever there is a hint of a problem, especially when it involves the health of people.
Thank you for reading. All the best.
------------------------------------------------------------------------------------------
Here is the list of contacts hatetane sent me to email:
[email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; @ima.is" rel="">hrefna.gudmundsdottir@ima.is; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; @ms.etat.lu" rel="">Marcel.Bruch@ms.etat.lu; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; @noma.no" rel="">helgahaugom.olsen@noma.no; @noma.no" rel="">kristin.kvande@noma.no; [email protected]; [email protected]; [email protected]; [email protected]; @anm.ro" rel="">roxana.stroe@anm.ro; @anm.ro" rel="">nicolae.fotin@anm.ro; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; @mpa.se" rel="">HPHARMACOVIGILANCE@mpa.se; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; @pei.de" rel="">Brigitte.Keller-Stanislawski@pei.de; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; @online.no" rel="">myhr@online.no
We can't make this any easier. Act.
Where are you @ACCUiTy? We are worried about you as it's been a while since we heard from you.
On 2/7/2018 at 8:41 PM, Gladiatoro said:Its fucking heart breaking that they are putting kids on this stuff.
These kids have absolutely NO idea what they are getting into down the road.
How many fucking lives have to be destroyed before this drug is pulled off the market.
Well who is willing to something bout this?
Stand up and be counted - there is so much you could be doing and it wouldn't take up much of your time.
21 hours ago, hatetane said:Where are you from? have you reported your side effects andare you interested in raising awareness about this drug?
I know someone who is considering getting a group together to sue - he is trying to gauge interest and will be setting up a website soon.
I'm from Poland. Yes, I have reported my side effects. I'm talking with many specialists about my problems but actually no one links them with isotretinoin. They say it's impossible. But I fight with them and I do more and more tests to prove them wrong.
Ofc, I can help you raising awareness. But in my post I was writing about suing my doctor, not pills producer. So in my case having a group will not help at all. But if some people have similar side effects it would be nice to hear about how they handle it in normal life because I'm just a shade of "previous me".
3 hours ago, niedlaizo said:in my post I was writing about suing my doctor, not pills producer.
You better act fast. You generally have two years. Id like to find legal cause for exception. Anyone?
What am I asking? Lets say the tests to diagnose side effects didnt exist for another five to 20 years. Would you still have a case?
STATUTE OF LIMITATIONS DEFECTIVE DRUGS | PRESCRIPTION MEDICATION SIDE EFFECTS LAWSUITS
https://downtownlalaw.com/faqs/statute-of-limitations/medication-side-effects-lawsuits/
Example #1: Client takes Actos in 2001 and is diagnosed with kidney failure in 2010. Prior to being diagnosed with kidney failure they had no prior history or knowledge that Actos was the cause of injury. This allows them 2 years from 2010 to file a lawsuit for their injuries. Even though they took Actos in 2001 the statute wont begin to run until they have knowledge of the injury.
Example #2: Client is given a prescription forChantixin 2005 and suffers a debilitating stroke and is unable to file a clam or seek legal assistance for her injuries until 2011. In such cases the statute will be tolled. A statute can be tolled or stopped when there is a serious medical impairment. In this case the statute can likely be tolled due to the clients medical or health issues.
4 hours ago, niedlaizo said:I'm from Poland. Yes, I have reported my side effects. I'm talking with many specialists about my problems but actually no one links them with isotretinoin. They say it's impossible. But I fight with them and I do more and more tests to prove them wrong.
Ofc, I can help you raising awareness. But in my post I was writing about suing my doctor, not pills producer. So in my case having a group will not help at all. But if some people have similar side effects it would be nice to hear about how they handle it in normal life because I'm just a shade of "previous me".
I don't see how they can keep denying. You gather up proof and present it to them. Try and get everything in email because down the line the fact that they keep denying everything will
stand you in good stead.
Did you ever see the consent form that Roche made patients sign in the US - no wonder the drug stopped selling no one in their right ming would sign it. They came to Europe
and prescribed it without a consent form and ourprotectors of health have let them getaway with it.
It states that People HAVE become suicidal and people HAVE committed suicide. It now states this in the PIL as well but still we have Dermatologist giving out this drug to kids knowing that it might make them commit suicide.
Why aren't more people outraged about this and why won't victims do a little more to stop what happened to them fromhappening to others - these victims are so young - can't we all join forces to ensure that kids are kept safe in the future, we should at least try - right?
No need to comment @TrueJustice I already know you don't give a damn!
59 minutes ago, guitarman01 said:You better act fast. You generally have two years. Id like to find legal cause for exception. Anyone?
What am I asking? Lets say the tests to diagnose side effects didnt exist for another five to 20 years. Would you still have a case?
STATUTE OF LIMITATIONS DEFECTIVE DRUGS | PRESCRIPTION MEDICATION SIDE EFFECTS LAWSUITS
https://downtownlalaw.com/faqs/statute-of-limitations/medication-side-effects-lawsuits/
Example #1: Client takes Actos in 2001 and is diagnosed with kidney failure in 2010. Prior to being diagnosed with kidney failure they had no prior history or knowledge that Actos was the cause of injury. This allows them 2 years from 2010 to file a lawsuit for their injuries. Even though they took Actos in 2001 the statute wont begin to run until they have knowledge of the injury.
Example #2: Client is given a prescription forChantixin 2005 and suffers a debilitating stroke and is unable to file a clam or seek legal assistance for her injuries until 2011. In such cases the statute will be tolled. A statute can be tolled or stopped when there is a serious medical impairment. In this case the statute can likely be tolled due to the clients medical or health issues.
Well we also have the issue that no legal team will take our case so that could also be argued when bringing a late case. The blood scandal and thalidomides I am sure would all have brought cases years after knowledge of the condition. The first thing you would have to do is to get a whole bunch of solid case histories and for someone to present this to legal firms.
You should look up vaginal mesh lawsuits - they have thousands of women bringing cases. These women have been injured in much the same way as you kidshave. It only takes one person to get a case taken to start the ball rolling.
Remember that erectile dysfunction and diminished libido were not added to the PIL until OCT 2017 even though they have reports of this dating years back. They had a legal obligation to warn patients about this - so why didn't they. This is a good angle but I just don't have anyone who is prepared to get together on this.
Certainly no change comes with no action!
My argument wouldbe that kids who become accutane victims are silenced by shame - a shame that should not be theirs and because they are traumatised. I don't think that anyone could argue against the possibilitythat many of you guys are probablysuffering from PTSD
Just though a would post this again for anyone who wants to take a look.
Some PFS guysclaimed to have recovered using this protocol.
https://issuu.com/anabolicmen/docs/the_secret_that_doubles_testosteron
13 hours ago, hatetane said:I don't see how they can keep denying. You gather up proof and present it to them. Try and get everything in email because down the line the fact that they keep denying everything will
stand you in good stead.
Did you ever see the consent form that Roche made patients sign in the US - no wonder the drug stopped selling no one in their right ming would sign it. They came to Europe
and prescribed it without a consent form and ourprotectors of health have let them getaway with it.
It states that People HAVE become suicidal and people HAVE committed suicide. It now states this in the PIL as well but still we have Dermatologist giving out this drug to kids knowing that it might make them commit suicide.
Why aren't more people outraged about this and why won't victims do a little more to stop what happened to them fromhappening to others - these victims are so young - can't we all join forces to ensure that kids are kept safe in the future, we should at least try - right?
No need to comment @TrueJustice I already know you don't give a damn!
I don't get it as well. But what can I do? I just can go to another specialist and listen what he/she has to say. But I'm just getting more annoyed because I see their faces, listen to their words and I just have feeling that they won their titles on some kind of lottery because sometimes I even have to correct their way of thinking so I assume their knowledge (when it comes to my side effects) is rather poor. And then I go to another one and I hear the same kind of bullshit. And right now I'm in bad position because I went to many specialists, done many expensive tests and after all none of them have any clue what is going on with my health. Sometimes I even think about suicide but I'm not this kind of person, so it won't happen in my case but I think this only one way to just release my body from that pain.
If Dr. David Healy is any example, this could be a type of specialist that could have an interest.
Neuropsychologist
Understanding how the brain influences our cognitive functions and behaviors falls upon the shoulders of neuropsychologists. Neuropsychology is a branch of psychology that is concerned with how the brain and the rest of the nervous system influence a person's cognition and behaviors. More importantly, professionals in this branch of psychology often focus on how injuries or illnesses of the brain affect cognitive functions and behaviors.
What Does a Neuropsychologist Do?
The duties and responsibilities of neuropsychologists may vary, depending on their specialties.
Some neuropsychologists, for instance, work primarily as researchers. This might involves studying both healthy humans and animals, and those with brain injuries or illnesses.
Neuropsychologists might also work in clinical settings as well. This typically involves assessing and diagnosing patients. This can be done by observing specific symptoms and using sophisticated technology, such as brain scans. After successfully diagnosing a neurological problem, neuropsychologists can then often recommend a course of treatment, which can include therapy, medication, or surgery.
On 12/3/2018 at 4:52 PM, hatetane said:Hi Jen, nice to hear from you. Can you please post the link as I couldn't find it. I will email you if I can find your address.
What can you suggest to get researchers on board? We will be sure to support anything you come up with.
hatetane - Are you on FB??? if so search for this page and join and I believe the mom has the link etc....Her son committed suicide years ago.Olly's Friendship Foundation
On 12/4/2018 at 7:45 PM, hatetane said:No need to comment @TrueJustice I already know you don't give a damn!
I think this is too much. Maybe a little oblivious but harmless are two words that come to mind. People just dont know about people.Their story. He said he took the time to comment on the recently posted link, also that he doesn't really suffer from ed, but made the good point of not feeling fit to raise a child because of sides. He has been a voice of reason at different points.
"I don't get it as well. But what can I do? I just can go to another specialist and listen what he/she has to say. But I'm just getting more annoyed because I see their faces, listen to their words and I just have feeling that they won their titles on some kind of lottery because sometimes I even have to correct their way of thinking so I assume their knowledge (when it comes to my side effects) is rather poor"
no Dr.,no researcher will ever know your body better than yourself.
You cant expect a Dr to come in and know what might be going on better than yourself at this point. Some have suffered through this a lifetime. A dr or researcher that spends 10 to 30 mins on you doesn't know what you do.
You need them for their tests and expertise in the field, but you might be on your own. No One else is going to troubleshoot this like yourself.
The way I see it, you got to find something, ideas that can be confirmed. Then you work backwards from this.
Then you bring the researchers onboard.
Its all good man - I personally dont take too much offensecause I know people are extremely frustrated with the situation were all left in, myself included. PersonallyI try to show self control and not lash out atpeople, others are more expressive than me I guess, their hearts are in the right place though sono great drama really.....everyone hasthe right to invest theirtime/energyin either trying to ban this product & protect others and/or get out there and seek different therapies etc and try and find a solution which is where my energy lies.
Im slowly coming round to the idea of supporting these pages on reporting side effects even though my truebelief still lies in people going out and trying different therapies etc to get out of this shit.
Someone might then ask - hows that working for you?....Well in terms of getting some wizard professor typeto help us find the solution, Im of the belief that unless there is some field of medicine were yet to discover the answer is still out there already,we just havent found it or used it in the right combination with other therapies/ lifestyle changes.
Im currently learning plenty via Kinesiology on how my body works, what things stress it out, what order you need to do certain things in to get results etc.
This has meant I can now cease withthe throweverything at my problems approachand follow some structure - the results are definitely there. I can now chuck out 90% of supplements I thought were needed and settle on what the practitioner finds that I need at any given time - I may not offer much on forum but surelymany can relate to the cupboard at home full of supplements, to thepoint where family members ask - not another supplementwhen you bring more home....
Will I make a complete recovery following this approach?? Not entirely sure, next year will be a big year having done a lot of work over these last 5 months, calming nervous system, reducing inflammation and clearing things - all these things are completely necessary to do as we head towards treating the GUT. Ivebanged onabout Gut forever on this forum and I absolutely know its the key - it has a massive relationship with hormones in both the head and in the reproductive system ( Im more in the head with depression but equally many of you suffer ED ) Ive no doubt Ive still got leaky gutto fix and this means coming off dairy and gluten and even certain vegetables for me such as tomatoes and corn to completely heal the gut.
Anyway, Im definitely in a better place over last 5 months seeing a Kinesiologist- not saying cured or any bullshit like that but what I do have is a more structured approach where I feel supported in what Im doing - psychologicallythats a massive leap away from feeling hopeless and trying to work it out all by myself. The 2 practitioners I see are really fucking good attheir jobsand know their stuff so I feel wellsupported in that regard
6 hours ago, guitarman01 said:I think this is too much. Maybe a little oblivious but harmless are two words that come to mind. People just dont know about people.Their story. He said he took the time to comment on the recently posted link, also that he doesn't really suffer from ed, but made the good point of not feeling fit to raise a child because of sides. He has been a voice of reason at different points.
"I don't get it as well. But what can I do? I just can go to another specialist and listen what he/she has to say. But I'm just getting more annoyed because I see their faces, listen to their words and I just have feeling that they won their titles on some kind of lottery because sometimes I even have to correct their way of thinking so I assume their knowledge (when it comes to my side effects) is rather poor"
no Dr.,no researcher will ever know your body better than yourself.
You cant expect a Dr to come in and know what might be going on better than yourself at this point. Some have suffered through this a lifetime. A dr or researcher that spends 10 to 30 mins on you doesn't know what you do.
You need them for their tests and expertise in the field, but you might be on your own. No One else is going to troubleshoot this like yourself.
The way I see it, you got to find something, ideas that can be confirmed. Then you work backwards from this.
Then you bring the researchers onboard.
In some cases you're right but let's be honest. You'll never have even a 10% of knowledge of group of specialists and making diagnosis on your own may even make it worse. I'm not a doctor but I'm a specialist as well in other field of science. And I often see people who thinks they're smart and they think that they know what they're talking about. But really most of them don't. Because they're not specialist in that certain area. And this is their first and the biggest mistake. Ofc, I have to think about what's wrong and how to fix it on my own as well but I meet a lot of specialists and they spent much more time than just 10 minutes as you suggested. So talking stuff like this won't help anybody in future. I know that for you it can be tough to fight with doctors or even too expensive to meet them regularly but for me it's not a problem. Even when I know that their knowledge about these certain side effects is poor I really believe they're gonna try to find the solution. Because this is what specialist does. And even when they keep denying, even when they ask the same stupid questions, even when they make me mad I know that some of them will treat it serious. Maybe not previous one, not this one, but somewhere there that person exists. I know it from my practice as specialist in other area.
Hi everyone. i feel like what Im about to post might be beneficial or hopefully helping in some way for people here. So after four years of running from doctor to doctor and all my results coming back normal, I did a lab test and it turns out my cortisol levels are high. Im currently in the process of discovering the reason/disease/syndrome behind this. Please check your cortisol level. I went to five specialists and four of them didnt want to test me and when they did they did a standard test that excluded the cortisol. The last doctor brushed off the high results of the cortisol. Im finally seeing a doctor thats working with me; currently it seems like a tumor and cushings disease (still not confirmed). Look up cushings disease.Im emphasizing to get tested because my symptoms did not match the symptoms of high cortisol levels, namely weight gain.You do not necessarily have to gain a lot of weight to get Cushings. Actually, only recently did I notice a bit of weight gain even though god knows for how long Ive had high cortisol level (Im looking at you Accutane...).I know someone on this website that got all his side effectsfrom Accutanecured after fixing his testestorone. Check your hormones. Not just the standard ones. Again check your cortisol.If anyones interested my symptoms are joints cracking, food intolerances, increased heart rate, hair fall, hirsutism, worsened acne, frequent urination, weak muscles, depression, anxiety, low libido, tremors,and sleeping problems. Im currently on a diet that an alternative doctor put me on (really just omitting all my food intolerances and diary. Plus Im avoiding processed and going organic as much as possible). I tried acupuncture and taking Chinese herbs, vit D, ferritin, probiotics/probioticsfor a while and Imcurrentlyworking out. In the past, I did a one month detox, but it triggered my frequent urination.
Has anyone here seen more detailed information on this article?
Werner B, Buajordet I, Madsen S. Cerebral symptoms after treatment with isotretinoin. Pharmacoepidemiol Drug Saf. 2006;15:S263
Quote
In the case of patients reported to the Norwegian Medicines Agency, single photon emission computed tomography (SPECT) of the brain was performed in 15 cases who reported lasting neurological symptoms. Altered brain function was seen in all cases involving altered or reduced frontal lobe blood flow.173 Ten of these patients were evaluated to have organic brain damage.
It is included as a citation in several other relevant studies, but I can't find a more detailed description from where this information came from.
Is anyone aware of a post-Accutane patient who discussed having one of these SPECT scans performed?
To answer your question, no Im not sure of this patient - sorry I cant help.
This organic brain damage they refer to though,is that just what we now know as chemo brain??
Just this morning I was reading that Aspirinis good for treating chemo brain - in this instance it was discussing women who suffer during breast cancer chemo.
The mere fact that this is what people have to resort to doesnt fill me with confidence- sounds to me that the medical industry doesnt really have an answer for chemo brain?
So with us, even if we did get diagnosed with organic brain damageit doesnt sound like anyone knows too much about treating it yeah?
Happy for someone to shed some light who may know more on how to treat it.
@niedlaizoI have also seen more Dr's and had more tests across a range of fields of medicinethen anyone that has ever come across this thread or anyone that ever will.
Im sure this extent would also compete with anyone from the CFS or Propecia threads as well. As one Dr. put it, she has never seen anyone my age with the amount of tests I've had run.
It's become shocking to some Drs. I've had tests run they didn't even know existed.
As far as accumulation of knowledge based on experience that pertains to having taking Accutane, Having seen multiple ENT's, Gastro Drs, nero's, rhum, cardiologists, multiple hospitals, one university, yes I will probably know more than 90 percent of the Drs you will meet on the possibilities of Accutane. I have met some very good drs along the way that have spent up to a hour with me.But at the end of the day they run their tests that they are familiar with, (that might relate) and that's that. They don't have the time to investigate.
I'm not talking about self diagnosis or to quit pursuing this, but i'm speaking from experience over the past 20 years.
I'm not saying im done either, but I have a good idea of what's been looked at as a whole.
I think the key is to find some things (medical vs clinical) that correlates in more then just one of us besides havingtaken Accutane, (this has been plenty based on on-goingsymptoms)and go from there.
On 12/7/2018 at 6:55 PM, Dubya_B said:Is anyone aware of a post-Accutane patient who discussed having one of these SPECT scans performed?
Yes. I know some thought insurance coverage might be a issue. A couple Dr's didn't really want to pull the trigger on this (I had problems even getting my last MRI that ended up beingrevealing) Some might not have the expertise to interpret results, and would rather refer a person out to a larger clinic and have them deal with it.
This is a example where a person literally prints out and brings the study in. You don't tell them, you show them.
I've seen that study, I've probably even linked it, I'll look back when I get a chance.
First this.
Retinoic Acid and Affective Disorders: The Evidence for an Association
179 references.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3276716/#R173
Decreased plasma folate concentration in young and elderly healthy subjects after a shortterm supplementation with isotretinoin
Our data indicate that a 28day supplementation with isotretinoin alters the plasma folate in young and old healthy individuals. This stresses the necessity of studying the longterm effects of retinoid therapy on folate status and homocysteinemia in acne patients, given that alteration in the latter parameters is known to increase the risk of degenerative diseases.
^maybe piece of the puzzle, this is something that doesn'tlast (according to blood tests) but shows a immediate change.
See what they are doing here? They are trying to justify it and figure it out as well. It doesn'tstop at folate metabolism.
@TrueJustice It mentions decreased blood flow to the orbitofrontal cortex. I'm not sure how these doctors DX'ed organic brain damage except for this difference in blood flow between the post-Accutane patients and normal variation in healthy subjects? It can't be compared to "chemo brain", which is simply a description of mental symptoms after chemotherapy.
I looked further into these SPECT scans, and they have a reputation of being unreliable. MRI is usually suggested in their place.
.
@guitarman01 Yes, I totally agree that printing out one of these studies that contain reference to diagnostic markers is the best way to approach doctors when one of us is seeking a test. The "Retinoic Acids and Affective Disorders" is where I found the mention of the SPECT scans, but the source text for that information is absent from from google or scholar searches. It might be a matter of contacting the Norwegian Medicines Agency or authors of the cited case report/article to find more information on how they went about the "organic brain damage" diagnosis based on an imaging technique that is supposedly unreliable.
.
QuoteAs far as the MRI, it showed thinning of the corpus callosum, which is basically lost nerve connections and mild cerebral atrophy. The two apparently go hand in hand.
How did you go about getting permission for the MRI that showed thinning of the corpus callosum?
What is the full extent of neurological or mental symptoms you have?
I think what you found is very interesting since your doctors found it worth commenting on.
I often experience what can be described as "brain pain". It is reminiscent of the feeling I would (still do) get from mental over-exertion, but this now occurs for no apparent reason. Imagine spending 4-5 consecutive hours taking a test on organic chemistry or differential calculus, when you barely have a clue about the material. This sensation hasn't been fun and I would very much like an answer for why this happens. It seems to correlate with severity of the emotional blunting and libido loss in my case.
.
I need to ask more but mykinesiologist mentioned that the grey matter in brain can be affected. Ive always thought it was pituitary or hypothalamus and it still could be but grey matter also needs to be considered- learning issues and problem solving issues not to mention speech issues.....look it up.
Youdlike to think its fixable as grey matter surrounds those other deeper regions of the brain, apparently ongoing blood vessel inflammation can affect it.
varicose veins, blood flow issues-that should ring a bell yeah!!
Now we all know about inflammation issues throughout the body after Tane - probably one of the biggest issues we must deal with first.
Just thought Id throw this one out there!!
8 hours ago, guitarman01 said:@niedlaizoI have also seen more Dr's and had more tests across a range of fields of medicinethen anyone that has ever come across this thread or anyone that ever will.
Im sure this extent would also compete with anyone from the CFS or Propecia threads as well. As one Dr. put it, she has never seen anyone my age with the amount of tests I've had run.
It's become shocking to some Drs. I've had tests run they didn't even know existed.
As far as accumulation of knowledge based on experience that pertains to having taking Accutane, Having seen multiple ENT's, Gastro Drs, nero's, rhum, cardiologists, multiple hospitals, one university, yes I will probably know more than 90 percent of the Drs you will meet on the possibilities of Accutane. I have met some very good drs along the way that have spent up to a hour with me.But at the end of the day they run their tests that they are familiar with, (that might relate) and that's that. They don't have the time to investigate.
I'm not talking about self diagnosis or to quit pursuing this, but i'm speaking from experience over the past 20 years.
I'm not saying im done either, but I have a good idea of what's been looked at as a whole.
I think the key is to find some things (medical vs clinical) that correlates in more then just one of us besides havingtaken Accutane, (this has been plenty based on on-goingsymptoms)and go from there.
@guitarman01Im gonna assume you went to an endocrinogist as well. How were your results?
On 12/9/2018 at 11:38 AM, Dubya_B said:How did you go about getting permission for the MRI that showed thinning of the corpus callosum?
What is the full extent of neurological or mental symptoms you have?
I think what you found is very interesting since your doctors found it worth commenting on.
Some comments from Drs have been, Are you able to work? Did you do Drugs when you were younger? We cant tell if its progressive, you could have been born this way.
I could see the full report of the MRI before my dr's office even contacted me. Always sign up for online test viewing if given the option.
PROCEDURE: MRI BRAIN WO IV CONTRAST
REASON FOR EXAM: Headache
COMPARISON: CT head, 9/10/2016; MRI head, 8/10/2013
TECHNIQUE: Multiplanar multisequence imaging of the head was performed
without intravenous contrast.
FINDINGS:
There is no restricted diffusion or acute infarct noted. No other
acute intracranial findings are seen. Gradient-echo imaging reveals no
intracranial hemorrhage or blood products.
There is no focal parenchymal edema or mass lesion or mass effect or
midline shift or extra-axial fluid collection noted. There is mild
volume loss of brain parenchyma, advanced for patient's age. No focal
parenchymal signal abnormality identified.
Pituitary gland is within normal limits. Posterior fossa structures
are within normal limits. There is thinning of the body of the corpus
callosum. This finding is stable compared to prior MRI, 8/10/2013.
Paranasal sinuses and mastoid air cells are clear. Orbits are within
normal limits.
IMPRESSION
1. No acute intracranial findings noted.
2. Volume loss of brain parenchyma is seen, advanced for patient's
age. No intracranial mass lesion or mass effect or midline shift
noted.
On 12/9/2018 at 11:38 AM, Dubya_B said:I often experience what can be described as "brain pain". It is reminiscent of the feeling I would (still do) get from mental over-exertion, but this now occurs for no apparent reason. Imagine spending 4-5 consecutive hours taking a test on organic chemistry or differential calculus, when you barely have a clue about the material. This sensation hasn't been fun and I would very much like an answer for why this happens. It seems to correlate with severity of the emotional blunting and libido loss in my case.
It seems physicalmore so than psychological. I keep going back to @Babiswith the low grade brain inflammation recognized by mayo on the PET scan, eventually this will probably take a toll.
On 12/9/2018 at 4:35 PM, Mabbbs said:@guitarman01Im gonna assume you went to an endocrinogist as well. How were your results?
cortisol has been in range, this has been a whole topic of discussion in the past, high cortisol, low cortisol.
This is actually one of the few specialist I haven't been to, but ive had alot of overlapping tests.
What about the pseudo tumour which manifests as pressure in the head - whats their take on that??
Im assuming it cant really be diagnosed hence why its called pseudo
However it is known to happen from excess Vit A intake - from memory they may need to do a lumbar punch to treat it
Anyone had this discussion with a neurologist??