Had my adrenal glands checked.
Cortisol, Aldosterone, Testosterone, all fine, nothing to worry about.
A small relief in all this madness. The rapid ACTH test was not pleasant, but it had to be done.
I know some of us have Addison's, how many of us have had our hormones thoroughly checked out?
A weight off my mind.
My cortisone levels and all that has been good. My testosterone levels are low (maybe my age) and I'm on trt which has helped me feel better. My ACTH is always high. My endocrinologist doesn't know why and said there's nothing she could do about it.
I have "Addison" and take a pill 3 times a day, so that's all. Easy to live with.
My endocrinologist say that we with AMN doesn't have Addison but it's the same symptoms and treatment, Addison is something you born with. According to the doctor my "Addison" can repair it self later in life but people with Addison will for sure have it all life.
I have Addison's and my ACTH has always been high, too. Because of fatigue, my endo wanted to raise my prednisone from 6 mg (which is 24 mg of hydrocortisone) to 7 mg, thinking it would reduce ACTH. I am now cautious because of my osteoporosis and take 5 mg with an occasional 5 mg of hydro when I go to the gym. I think perhaps 4 mg of pred. is best. But I digress. I also have testosterone shots every two weeks which also helps with bone health and energy.
Forgot to add, for fatigue, Modafinil. mod4all.com
And ALCAR purebulk.com/alcar-acetyl-l... I love ALCAR, lovely stuff.
Fatigue gone. I am currently enjoying some 4-AP-3-MeOH from mod4all as well. I am still stumbling about, but it is a different kind of stumbling about. I'll post more about 4-AP and 4-AP-3-MeOH later, despite the fact I've already posted plenty
Then again, SongStream , we are all different. I spent a lot of time in that Nephrology department talking hormones with the doctor. Fantastically complicated. 200mg of Modafinil works for me, but that is me.
No hormone supplementation for me yet, (yet).
I hate fatigue. I lived with it for years. Don't know what is worse, fatigue or spasticity.
I tried modafinil for a few days and didn't really like the way it made me feel. 200mg the first day, 100mg the second day then down to 50mg for a few days. I might try again later...
Do you need a Rx for Modafinil when purchasing from mod4all.com? I'm already experimenting with 4-AP and my neurologist may think I've gone rogue. : )
Hi Songstream, I know what you mean! My neurologist did not know about 4-AP, nor did his MS colleagues! It was only when he contacted Dr Eichler at Mass Gen that he prescribed it to me. I am curious about modafinil.
Modafinil has got the rap for enhancing cognitive function and attentiveness, although, it is prescribed for narcolepsy. I liken this drug to the movie and TV series "Limitless".
Monkeybus, have you ever had insomnia while taking this drug?
No prescription. I just buy it.
I love Modafinil. Made my life livable again. I mean that. I was crucified by the fatigue. I've posted extensively about it before.
I do like Piracetam as well, a lot of people rate it as a grade A Nootropic
I've taken a lot of those Nootropics, Piracetam, Aniracetam, Coloracetam, Pramiracetam, Oxyracetam, XXXracetam, Hydergine, Vasopressin.
They all have one thing in common: They do not make you more intelligent. Modafinil, though. Not too sure. Made me more productive as a husband and a father. I work 12 hour days, try that with chronic fatigue.
Some very interesting studies done with rats in mazes, giving them Nootropics and they solve the maze quicker
Modafinil works. Wakes me right up. Then again, my friend says it did nothing for him.
Anything is worth a try, I say.
Doesn't give me insomnia, as soon as it wears off the fatigue hits me like a steam train. The spasms keep me awake though.
I'm very inquisitive now. How many hours would you say the effect lasts? If I take it in the morning, would it last until late afternoon? I just want to ensure that it won't interrupt my sleep being that I already have sleep disturbances. Thanks, monkeybus!
Modafinil will keep you up all day and all night if you take enough of it. It is prescribed for narcolepsy after all.
I used to chop the pills into quarters, mostly to ration the Modafinil, but now I buy 200 pills at a time. I take halves now.
Sleep disturbances? Don't get me started talking about sleep disturbances. I've had them for two decades. Part of the disease.
I have to take something before bed.
Melatonin.
puritan.com/melatonin-542/m...
L-tryptophan.
puritan.com/now-foods-brand...
purebulk.com/l-tryptophan-p...
It is the spasms that keep me from sleeping. Obviously, the spasms are but a symptom of a far, far deeper problem deep within my body.
I get a quality sleep and a quality day now. Took a long time to get here.
There is a much bigger question of which medicines can really help us. Established, tried and true medications, readily prescribed for other diseases where the symptoms overlap with our disease.
I am still hoping Low Dose Naltrexone will help.
mod4alll.com/zc11/index.php...
Just found this.
Modafinil reduces fatigue in Charcot-Marie-Tooth disease.
ncbi.nlm.nih.gov/pubmed/170...
Charcot-Marie-Tooth disease = Heriditary Spastic Paraparegia. This is the disease I was first diagnosed with.
I'll wager CNS fatigue = CNS fatigue. No matter which disease.
The spasms and the bathroom visits have really taken a toll on me. Weaning off Baclofen for Gabapentin was unsuccessful for providing relief from spasms. I'm now back on baclofen.
On a side note which I think I may open a new thread:
Over a month, my legs are so rigid when I get out of the bed in the morning that it is frightening! I have even taken falls where I have even hit my head. It takes awhile for me to stretch to return to my normalcy. I am wondering if this is a symptom of progression or a side effect from 4-AP.
I don't think that's a side effect from 4-AP. It happened when I was taking baclofen as well. I always did have spasticity/stiffness when I wake just because I've been laying down for so many hours. It's the same as if I sat for more than half an hour or stood. Movement helps to keep it away, but then fatigue arrives after some time and spasms ...
I'll have to agree with julie_
Rigid legs in the morning is, in my opinion, just the old spasticity doing it's job.
I'd be stiff in the morning, but I take a hefty dose of Lyrica before bed, so I'm still fairly relaxed in the morning.
Then again, you never know. We are all different.
I'd read up about 4-AP for months before I took it. Headaches, sickness and possible seiures.
One heart attack as well. Blimey!
Thanks Julie and monkeybus for your replies.
I already have the existing rigidity of my legs upon wakening or getting up from a stationary position but these recent morning risings have been much worse where I almost couldn't even stand. The differences are much extreme where I just wanted to transfer to a wheelchair.
Really, really, we should team up with the other AMN boards and form a map of the world, listing;
Current age,
Onset age,
Spasticity level;
Hormone level;
Fatigue level;
Pain status;
And all that.
Unlikely to lead to a cure, but it would extremely interesting. I'll get on this, along with all of the other things I keep meaning to do.
Absolutely Monkeybus. I agree on the need of collecting info for the sake of science or just ourselves. Last week I found out about the ALD Connect Patient Portal:
x-ald.nl/clinical-diagnosis...
I registered. I think it's still missing some valuable points though, (many of those you listed for instance!) that's why it's probably up to us giving them feed back. I, for once, I'm surely grateful these are the people that first came up with a more accurate stats about female phenotype.
So, what causes high ACTH? I don't have Addisons and my cortisone levels have always come back normal or a little high.
deengo , the endocrinologist explained this to me (I wasn't really listening because he'd already given me the all clear).
But it was the lack of communication between the adrenal glands and the brain.
The brain isn't sure about the level of cortisol and so it keeps pumping out the ACTH regardless.
I am seeing him again next week. I'll ask him again.
Thanks. I'm going to a new endo in March hoping she is better than my other one. In my situation. I only have 1 kidney and the kidney doctor (I forget the professional name) said I may have only 1 adrenogland which is making my ACTH levels higher to have the one I do have work normally. That's his theory.
Diagnosed with AMN
A new problem for me!
Bladder problems
Speculation.
