1. Last Week
  2. first day almost done 

    so far have 16mg of prednisone floating around in my system and don’t feel anything too drastic yet. Two more pills before bed. Definitely less achey and weirdly more clear. Nothing to write home about.. gonna try and finish this out though even if nothing happens. 

  3. Last Month
  4. 1 minute ago, TrueJustice said:

    How are you responding thus far?

    hopefully you get a good result from this 
    Haven’t started yet! Think I’m going to start tomorrow!

    Wanting to make sure there is nothing happening (went out the other night drinking and got pretty drunk) that could possibly skew my results. Want to be back at home in case things go south or something. 
  5. 8 hours ago, flynn said:

    Hello people, 

    If anyone has blood results for follicle stimulating hormone (FSH), Luteinising hormone (LH) and/or DHEA. Could you please post them in a reply to me or even better post them here - https://www.pasforum.info/forums/blood-tests-results.8/

    Something caught my interest earlier. I have seen numerous PAS people report high DHEA levels. I was looking at the neurosteroid study of PFS patients. Interestingly, DHEA was one of the hormones which was found to be high in PFS people along with testosterone, 5-alpha-androstane-3alpha and 17-beta-diol in the CSF.

    It could be a coincidence but its possible there is a connection. It would be very informative to have a study of PAS patients which looked at the levels of neurosteroids as in the PFS study. This would provide us with strong evidence as to whether PAS is or isn't related to PFS and 5 alpha reductase activity. I wonder how much it would cost to have a person like professor Melcangi conduct the same kind of study on PAS patients.  - https://www.sciencedirect.com/science/article/pii/S0960076017301024

    If such a study was every completed and the results provided strong evidence to suggest PAS is indeed linked to PFS and 5 alpha reductase, it would provide a great motivation for PAS and PFS communities to combine resources/donations to find a treatment or pressure for more research to be conducted to provide greater evidence for these conditions and wider acceptance in the medical community. It is only after PAS has been acknowledged as a syndrome/condition that research into treatments/cures can be justified. 

     

    I had high DHEA ! 
    85-690 and mine is 757

    my FSH was also high 

    1.6-8.0 and mine was 9.5 
  6. 28 minutes ago, mikez said:

    Oh good point, yes HC is quite weak true.      And I see where you are coming from.   You aren't trying to correct what you feel is low cortisol, but rather inflammation.   I hope all goes well..keep us updated :)
    Yes exactly! Sorry for the confusion! I will !
  7. 1 hour ago, mikez said:


    That's true for 5 days, but what happens if it works?  Do you stay on it forever?    Also keep note a lot of hormones 'poop out'... that is , initial response, then nothing.  This is due to natural down regulation and negative feedback loops.  

    I experimented with low dose  Hydrocortisone a while back, as a GP thought I had low morning cortisol, and supplements weren't doing much.   I noticed a significant change in libido, fat loss, appetite increase, etc but after about 10 days, lost the response.  I tried it again a year later, and a year after that, and wasn't able to even get 1 day of response.


     
    Hydrocortisone is quite a bit different in my opinion. Not nearly as potent. I have excess plasma proteins. I’m trying this as an immunsupressor versus a hormone. 

    because I have 
    •proteinuria
    and I had an abnormal spike on my electrophoresis. (It wasn’t multiple myeloma thank god but I never had protein in my urine before and it seems to only get worse)
    my total blood protein seems to be getting higher and higher
    and my ESR was low which is indicative of hyperviscosity 
  8. 6 hours ago, mikez said:


    Did you get your hormones tested, like a 24 hr salivary test or urinary?   Any time you take that stuff you are suppressing your natural production, and would have to wean off carefully if not suitable, so unless you really need it,  I'd be careful. 
    all hormones were normal. no salivary or urinary cortisol but I did a blood one! 

    I’m just trying it to test out the immunosuppression theory.

    its a medrol pack for 5 days cause I said I had migraines (which isn’t a lie) so it shouldn’t suppress my hormones to a crazy extent.
  9. Got myself a medrol pack.... 


    here we go folks...

  10. Trying every excuse in the book to get a prednisone taper. If my symptoms subside then I know autoimmunity is the route and if not then... onto the next solution. 

    I hear docs prescribe prednisone for migraines... may try telling my neurologist I’ve been having really bad migraines and need a stronger anti-inflam. 

  11. @guitarman01 Did you ever have a cytokine panel done? Would you even consider it helpful ? 
  12. 1 hour ago, TrueJustice said:

    What are they looking for specifically with these tests? Chemo brain damage?

    I know what you mean by being uncomfortable, I went to have one, an MRI about 13 years ago and couldn’t go through with it - way too claustrophobic for me and I ended up moving around too much and the reading wasn’t accurate. The lady said you can be sedated for this procedure but I moved on and never came back to doing it.

    I totally get why some of us are looking at these procedures- the biggest issues for me are head related....brain fog, generalised pressure in the brain, light sensitivity etc etc

    Could be just inflammation but the age old question, what to do about it??
    I just don’t know what to take? Turmeric perhaps if you want the natural stuff but what else for inflammation??
    No, the MRI was totally fine. The emg was uncomfortable. 

    And no not looking for chemo brain damage. Looking for lesions, shrinkage (although don’t really have anything to compare it to), encephalitis, inflammation in general etc. 

    These can be indicative of MS.. So I need to rule it out.

    My left vocal cord is paralyzed. Something is attacking my nervous system. And I’m sure whatever is attacking it is also attacking several other things. Propeciahelp has several threads focusing on autoimmune and I really think we need to start zoning in on it. Let’s be honest... corticosteroids have been the ONLY medications to bring people back from this 100%. (Or at least close) 

    We think it’s androgen insensitivity? I think our androgens are constantly blocked by some weird antibody that went haywire. Our 5AR replenishes.... what happens when it replenishes? It gets blocked and then the cycle starts over again. The only way to stop it for now, is to suppress the immune system. 

    We wont know until we try. 
  13. 1 hour ago, brendan452 said:

    Will the MRI and EmG hopefully give us the answers we need 

    Couldn’t tell ya. My EMG was normal.. but practically all EMG’s are deemed normal unless you’re wheelchair bound. It’s a pretty barbaric test and even my neuro doesn’t like doing it. She just wanted to make sure nothing was attacking my limbs. The MRI on the other hand might.. 
  14. 37 minutes ago, mikez said:


    Ive got a referal for one but keep putting it off.   Im actually ok with tight spaces, but reading about the contrast agent has got be a bit paranoid for a few reasons.

    What was uncomfortable for you and Im wondering, did they use contrast? 
    No. The MRI was totally fine and yes I got with and without contrast. Just close your eyes and just let yourself relax and you’ll be okay.

    The EMG was terrible! For the EMG they were literally poking and prodding needles into my muscles and it was horribly uncomfortable. Like toe/foot cramp times 20000
  15. Got my MRI done today, along with an EMG..



    and holy FUCK it was uncomfortable. Definitely do not recommend. My doctor insisted I have it just to make sure we get everything covered..

  16. 1 hour ago, guitarman01 said:

    no

    I have tested for Biotinidase deficiency. It came back in range. I have not tested actual blood levels of biotin.
    Biotin is something that is produced by bacteria though, just like some other nutrients. 
    I have read enough though that in a case of dysbiosis bacteria can "steal" and repurpose some nutrients for further growth.
    So maybe there is a catch 22 where even though you need some nutrients, supplementation might do more harm than good.
    As you have mentioned this quite a few times yourself. 
    What did they see again? I know you had abnormalities 
  17. @guitarman01

    You didn’t display any lesions when you had your MRI did you? 
  18. In my opinion we basically get an “accutaned” form of MS.... 

  19. I’ve been interested in the nervous system ever since my vocal cords start having problems. It would only make sense considering all of our problems are widespread throughout the body. 

  20. Does anyone else get a mood boost from coffee...? 

    I know I read somewhere that it mildly reduces inflammation in the brain.. 

  21. More Than a Month
  22. MRI next week. 

    Who knows what will happen! Maybe they’ll see some encephalitis ? Is it weird that I hope they do? Lol 

  23. 3 hours ago, guitarman01 said:

    I know my results. I will get another copy of the test and screenshot it or see if I can get the format viewable online.
    0.07  considered positive according to Mayo. It said considered positive according to their interpretation. 
     Reference Values
    https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/37429

    AChR Ganglionic Neuronal Antibody

    < or =0.02 nmol/L

    Cautions new-info-icon.png

    Negative results do not exclude autoimmune gastrointestinal dysmotility or cancer.

    Yes you cant compare quest to mayo, the labs are different, the numbers are different . the numbers do not coincide

    I thought quest would be the easiest test to get or approved over the mayo test.
    In the future id look into one of the following,

    Autoimmune Gastrointestinal Dysmotility Evaluation, Serum
    https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/37429

    Autoimmune Dysautonomia Evaluation, Serum
    https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/37428
     

    I think its safe to say gastric dysmotility has been confirmed for me.
    Not only with this test but also CT Scan. I might actually present this acetylcholine test result to a gastro dr next, before another neurologist. 

    Orthostatic hypotension has been disproven at least for myself through tilt table testing 
    This doesn't mean I don't get light headed. Or used to.

    me too. eosinophilic esophagitis. not the most common diagnosis. 
    Thanks for the recap! Hoping when my results are displayed through my quest app, I’ll have some form of measurement. 
  24. 21 minutes ago, TrueJustice said:

    I knew you wouldn’t get a comprehensive result with this, just knew it, though I commend you for trying.

    like everything nothing ever comes back with a clear diagnosis.......so the self diagnosis and experimenting shall continue I guess.

    On another note, the whole Vit A supplementing theory has been talked about for years on this board, everybody has mixed ideas on it but we’d all have to agree that it’s interesting that Doctors choose to put some Accutane patients on it when problems arise, that in itself is interesting- how do they know to do that?? Maybe some of the Indian doctors know more about the mechanism of action with Tane?!!

    Maybe we need to experiment more with Vit A and slowly build up the dose, could be that initially we feel like crap but slowly our tolerance can be built up....dunno it’s just an idea.

    Put it this way, if it cured night blindness for someone, might it not also cure a few other ailments??
    Lol it’s not comprehensive because it was through quest and not mayo and they have a different setup/process. I don’t have MY result, I just know it wasn’t greater than 53pmol/l. There are varying levels of this antibody. (So it seems) and I won’t know until I get my actual numbers 

    One thing I can definitely say for me is that this is highly neurological. 

    Gastric dysmotility? Check
    Orthostatic hypotension? Check
    Vocal cord dysfunction? Check
    Light/Sound sensitivity? Check

    Even if it’s not this specific antibody, there are several antibodies being considered for dysautonomia. I could very well have an immune related form of POTS. It would explain the constant fatigue. It’s for sure my immune system... IF I catch a cold it is wiped out 1000x faster than pre-tane. 


     
  25. 2 hours ago, guitarman01 said:
    This actually made me laugh. That about sums up the craziness of it all.
    That paper discredits vitamin a being classified as a vitamin, but a toxin instead. Pretty radical idea. 
    We dont need anything that graphic of that last pic please. That is a serious nosebleed though. Pretty sure this was 25,000 iu daily for one month. 200k would be quite the dosage. Il get back to this when I have more time. On my lunch break.
    Sounds good. I’m just confused because I thought it was more of a “if you have the antibody” versus it meeting a certain reference range? 

    It says on quest that results should be less than 53pmol/l which converts to .053 nmol/l 

    The low-positive for this test is .03-.09 I believe. How the hell would I even know without my results? Basically all quest did was check to see if it was greater than .053 and it wasn’t so therefore I’m negative? Bullshit in my opinion. My nurse said my amount wasn’t even displayed. But quest does submit my labs digitally through their app so I’m wondering if I’ll get a number on there and then I can be like “hey doc look” 

    If I can remember correctly @guitarman01 Mayo measures it in nmol/l and gives you your actual measurement. I wish you could find your results 
  26. Question @guitarman01

    So, I called and they said that if it wasn’t greater than 53 then it’s deemed negative. (Which is NOT true) 

    Because there are several cases where lower titres are found with the same amount of symptoms. I asked her for my value but she said it wasn’t provided... which sucks because if it’s not documented then I’ll never know if I have the antibody or not. 

    Quest must have a different setup for it. It literally says on the website <53

    What am I supposed to do with that ? Pretty positive Babis received a “negative” result but later found out that he had the antibody just not in mass amounts. 

  27. So I was in class today when I received a call from my neurologist with lab results for my AcHr Ganglionic antibody test...

    Normally they will leave a voicemail stating that the results were normal if they are indeed within range and that’s the end of that. But they asked me to call them back to talk about them. Their office closed before I could call back so I should have the results tomorrow... 

  28. @guitarman01 We’ve gotta find a way to get in touch with Babis...