Don’t know if it’s Auto immune??

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My brother is 21 years old now, past 4 years started suffering from pain and discomfort on the right side of his shoulder and collar bone area, scapula juts out. Neck stiffness. Now has numbness, muscular stiffness and extreme leg cramps. Feels like eyes muscles have weakened which is leading to little blurry vision and tearing in eyes, facial numbness and jaws effected, lower back pain, part erectile dysfunction, muscles weaker in groin, hand fingers stiff and swelling, can't tolerate hot temperatures, neck joints and back joints crackle, neck region most effected they have become stiff and have lot of sharp and pulsating pain, this all have slowly and  gradually developed over last 4 years.

Have shown to various doctors and they all have been unable to find the cause of the problem and various suggested treatments have been done with no relief, kindly guide.

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6 Replies

  • Posted

    Hi,

    I'm Cindy, in California, USA.

    I think you are wonderful to look for help for your brother!

    Has he been seen by a Neurologist? Or Orhopeadic surgeon?

    The reason I ask is, many of the symptoms you discribe can be from pinched nerves in the neck, (cervical), upper spine area.

    I had a bad case of "whiplash", from a car wreck. I had many of those symptoms. (not the erectile dysfunction).

    He should have Nerve Conduction studies done to pin point which nerves are involved.

    If this has been four years, nerves can cause the muscles to pull spine out of shape with a constant tention in tense muscles.

    With the upper body problems, I doubt he goes out jogging, so yes, the lower body will get weaker.

    Have you looked at online medical sites? Anything with pictures, that look similar to your brother's condition?

    I am going to see if I can find anything online.

    (I have memberships at Harvard, Yale, Stanford and other USA medical facilities. I have a rare disease that I research new studies for.)

    I will search online for you tonight. I am doing laundry right now. Later, I will sit and search for any possible condition you have discribed.

    If I find anything, I will let you know.

    Cindy

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  • Posted

    Hi,

    I found this, I don't know that this is what your brother has, I am not a doctor. He can be checked for it - Or at least rule it out.

    You know his symptoms... Do these sound like him? It is a form of muscular dystrophy. Does anyone in your family have anything like this?

    It also mentions some other medical conditions and diseases similar to this.

    There is a support group at the end of this link. I don't know what country you are in, but they should have world wide support.

    I hope he doesn't have this, but I hope he gets a diagnosis soon!

    You are both in my thoughts and I wish you both the best!

    I will research more, later tonight. To see if I find any more conditions.

    I hate that I have a bad ,rare disease, but finally getting a diagnosis - WAS A RELIEF!

    You can't treat what you don't know you have.

    Cindy

    https://www.mda.org/disease/facioscapulohumeral-muscular-dystrophy/signs-and-symptoms

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  • Posted

    Hi,

    This is an excellent example of why I never give up! Why I keep hope and keep searching for treatments...

    This is a brand new drug for a form of muscular dystrophy:

    https://www.fshsociety.org/category/breaking-news/

    I am sure no matter WHAT might be wrong with your brother, YOU will also keep searching for answers and treatments.

    If my brother had needed a cast or a wheelchair...

    I would have made sure it was the best and coolest cast or wheelchair I could find or make.

    Don't forget, when you do get a diagnosis, look at clinical trials. Clinical Trials are what make these new medications possible for many illnesses and diseases.

    I am still researching conditions that might be affecting your brother.

    Cindy

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    • Posted

      Dear Cindy, I would like to thank you on behalf of my full family for the time spent on sharing your views and suggestions. I wish he can be diagnosed quickly and right treatment starts quickly. I shall keep u updated on developments. Our entire family prays for your well being and happy life. I am from India, shall check the link.
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  • Posted

    hi, well yes could be auto immune. I had above symptoms and have an auto immune issue which went undetected for years. Relief came when I got diagnosed and had appropriate treatment. Blood tests can show very little but indicators are the following raised esr crp and check ana. It is worth seeing a good rheumatologist but sometimes they are not great at working through these medical puzzles either. As with lots of things it takes a good doc to make the right connections. But that is your starting place and not being fobbed off all the time takes courage and a lot of single mindedness. I always knew I had an underlying issue and it took the ability to keep pushing to get the diagnosis. 

    Also at the same time please check all the usual bloods and the possibility of any other basic causes. But if everything else is being ruled out then that's the route I would choose. 

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  • Posted

    Have your brother tested for AS Ankylosing Spondylitis ( H LAB 27 ) is the name of the lab work he would need. There is a lot of information on line in regards to AS. My brother started out with small things like not being able to move his neck, arms, or legs in the morning due to stiffness it ended up affecting him to the point he became hunched over losing a foot and a half of his height by the time they figured out he had AS. His spine had fused together and they didn't catch it in time. He almost could not walk at the end of it all. We ended up losing him to cancer 2 years later. We still to this day do not know if the AS had any factors in the cancer. We have learned through this all that no matter your alement that early detection is KEY TO SURVIVAL of any and all conditions. You are your own best DR. if your body is not feeling right then go to the DR. and make them draw labs to check you out. Because our body's just dont start having things go wrong for no reason. I hope you find out what is wrong with your brother. i will send good vibes to your family for a healthy recovery to you and your brother.

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