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I am new + have a question
Hello everyone I am a 24 yo male and I have FSHD. Its pretty okay compared to other forms of MD. The reason I am here is because I found this blog to be very helpful and I have a question regarding the use of drugs with MD. I smoke hash (THC) almost regularly, I drink alcohol occasionally (I know its not good for me) and recently, I have started using Ecstasy.
This is what I am concerned about the most and I can’t find any information online regarding the use of ecstasy with MD. For those of you who do not know about the drug. It is mostly called Ecstasy, E, or X. It is a pill that is mostly MDMA. Its effects are a state of happiness, euphoria, overflow of emotions, care for others, etc. This happens due to the higher than normal release of enzymes in the brain called serotonin and dopamine which are greatly responsible for the person’s mood. (I’m getting this stuff from the internet, i’m no expert).
I am not sure if my question is inappropriate so I apologize in advance if I broke any rules or guidelines .. That is the end of my concerns (for now), I am living well thankfully up until today. If you will not die of boredom by knowing more about me then keep reading below. (I am very bad at speaking about myself so bear with me)
I found out about FSHD when I started noticing my shoulders slumping, around the age of 15 or 16. At first I didn’t notice any muscle weakness because I am very very skinny with little muscle mass anyways. Of course it wasn’t so nice when it became harder for me to do certain normal movements like raising my hands or reaching out for something without supporting my arm weight. This is the first time for me to be talking about my thoughts and feelings towards the disorder to someone other than myself
Progression:
Only in the past couple of years have I noticed that I am getting weaker more quickly. Mostly when I do something like lifting a heavy object or exert muscle effort for a prolonged time (relative), that muscle stays weak and hurts a bit for a couple of days.
From what I understand, the progression of the disease is unknown, so that is good news for me because it means I do not have to be worried because I do not know what to be worried about. I believe I have come to terms with the possibility of not being able to walk and do certain stuff, etc. in the future.
Up until now it has been easy for me to stay positive, I think the reason is that I was diagnosed at a young age and wasn’t fully aware of the complications. But I got used to not making a big deal about it.
I do not know if in the future I will still be accepting of it. My biggest concern is not being able to do so.Medication:
I have tried taking creatine and another muscle supplement (or so) for a while, but didn’t notice any improvements so I stopped that quickly. I have not been taking any medications for about 7 years now. Also, I believe swimming is the best, so I do that when I have the chance to.I want to point out that, I have noticed major improvements when I was going to boxing training. I was able to build (some) muscle mass in my upper arm muscles. I felt much better and much stronger during that time, my shoulders straightened a bit, and was overall more capable of doing more activities. However, as soon as I stopped training the muscles quickly got weaker again. I also do not know if this was bad for my muscles in the long term.
That is all for now. Again, I consider myself very lucky for having one of the easier types of MD.
My thoughts and prayers are with others out there who are experiencing troubles with MD and other chronic diseases, life is fair, don’t worry I believe you are only going through this because you have the capabilities to endure and overcome it
Thank you for reading and I will appreciate any feedback. Sorry for the super long post.Re: I am new + have a questionA personal opinion here, but I would not consider it advisable to use illegal drugs at all, ever, and certainly not regularly nor as a reason of self medicating.
You sound and write articulately and intelligently therefore you likely already know that FSHMD really does not have ‘over-the-counter’, prescription drugs for treatment. Advice from a Neuro-Consultant, Neuro Nurse or some such qualified medical person would be best to help manage and alleviate the symptoms you are experiencing.
Have you received a confirmed diagnosis? Many types of neuromuscular conditions have similar signs.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: I am new + have a questionI have to agree with AM here the use of illegal drugs is never advisable, buying over the internet as well could be dangerous too. If you haven’t already done so a referral to a Neuro-Consultant for a confirmed diagnoses could be beneficial.
Re: I am new + have a questionI imagine there is no information available concerning people with MD using illegal drugs because no-one in the medical profession would countenance such trials or tests. You must know the inherent risks associated with using Ecstasy – indeed using any illegal medication is dangerous and I doubt you will come across anyone who would recommend such action. As the previous replies suggest, it would be best to see a medical professional regarding your diagnosis and at the same time raise your questions with him/her.
Sybylla
Re: I am new + have a questionThank you all for your replies.
Please if you find any information from research or studies regarding the topic let me know
Re: I am new + have a questionHI,
taking any drug of unverifiable origin is dodgy as you can never be sure of the levels/dosage in any batch or even contains MDMA. Im sure you have trolled the net about X but you should speak to a neuro on how the will be on your MD.
Did you know:-
taking E increases body temp Increased heart rate, blood pressure, body temperature, perspiration and sweating. lots of people with MD have trouble regulating body temp normally so taking E is going to make you dehydrate really fast and could cause muscle cramp worse that it would someone without MD. over heating is one of the most fatal side effect of E even in healthy people which when dancing etc causes them to drink too much water and this causes sodium problems in the blood and swelling in the brainalso causes urinary retention
I personally wouldnt risk it but just be sure you trust your source and for tell someone what your taking so that if the worse happens the medicos know how to help you and carry a medical alert card stating you have a form of MD
take care
CatRe: I am new + have a questionThank you Cat!
This was very helpful.
I did know about the side effects of E that you mentioned, however, I didn’t know that over heating is harmful to people with MD or that we have trouble regulating body temperature, why is that?
Unfortunately I can’t ask my neuro because he is a family friend and wouldn’t know anything about drugs anyway. I live in Egypt and most doctors here wouldn’t know about E. Most neurologists here aren’t even aware of Muscular Dystrophy.
Thank you Cat for being so informative and to the point
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