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I need help! Just at a loss and confused. I'm a mystery!
Hello 19 M 254 LBS 6'1
I am going to add a list of symptoms that I plugged into chat gpt (its an easy way for me to keep up with them). Please see below. I have no idea what else to do. My doctor it just seems like he won't listen.
Current Symptom Summary
- Progressive difficulty with walking and balance over several years.
- Legs often feel weak, heavy, tight, or like "jello."
- Trouble climbing stairs; legs fatigue easily.
- Difficulty standing up from the floor without using hands.
- Trouble with heel-to-toe walking; balance problems while walking and in the shower.
- Severe heat intolerance. Hot weather causes worsening dizziness, weakness, fatigue, blurry/jumping vision, and unsteady walking.
- Dizziness for approximately 8 years, sometimes with palpitations, shortness of breath, lightheadedness, and fatigue.
- Vision disturbances including occasional double vision and a sensation that vision is bouncing or jumping, especially in heat.
- Lower back tightness and pain, especially when standing still for prolonged periods.
- Muscle weakness and reduced endurance in arms and legs; difficulty lifting heavy objects such as a case of water.
- Muscle soreness, particularly in the upper arms and shoulders, worse on the right side.
- Intermittent numbness, tingling, and pins-and-needles sensations in the legs and feet.
- Brief electric shock/buzzing sensations through the body.
- Occasional facial symptoms affecting the right side of the face.
- Daily brief neck jerks or sudden involuntary movements.
- Episodes of body numbness or sudden "jolting awake" sensations when trying to fall asleep.
- Finger, hand, and forearm pain at times.
- Excessive sweating, even in air-conditioned environments.
- Symptoms appear to be gradually worsening rather than improving.
Relevant History
- Osteopenia/osteoporosis since childhood.
- Low vitamin D history.
- History of low testosterone levels.
- Cushing's testing reportedly normal.
- Muscular dystrophy testing reportedly negative during childhood.
Thank you all for checking this out! Send some tips, ideas, etc. My way! Thanks!!
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A lot of those symptoms sound like SS. How is your hearing?
@mister1
Thank you very much for the helpful info! I will definitely try and if not I have an appointment scheduled with a new physician.
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1 Reaction@stevegrinstead
It's not bad! Sometimes they will ring but not often.
@mister1 I recommend a second opinion with a dr who will listen to you & help you get to the bottom of it
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4 Reactions@chrisfd
Hi,
Don't be scared, better the devil you know than the one you don't.
I have had time to get used to my fate and am at ease with it. I look at my fate knowing we all die sooner or later, and there are people fare worse off than I. The beauty of my health issues is I only feel really deep pain and that isn't that painfull either. I try not to think about the consequences ahead of me and focus on what I can get through each day The brain is a wonderful bit of equipment that will try to work around obsticles throw in it's path given half a chance. All I do is work with it. I use Google AI as an index to all the medical books I don't have time to read. Yes, I don't believe everything it throws at me but as an index it is brilliant. It has allowed me to pin point what I thought was happening so I could challenge Doctors with my result and ask point blank do or do I not have this. It helped in focusing their thoughts and giving them the keys to unlock my health issues. My persuit was and still is relentless with AI. It gave me the clue to look at a J tube insertion as a work around for a stomach that takes 2 days to digest anything and a bipap machine that could keep me alive long enough to get a J tube fitted. Daily the body goes into self protect mode and shuts down the body closing the resperation for seconds before the brain realises it is also killing itself and kick starts my breathing again. Scarry the first time but knowing and trusting it will recover itself until it doesn't, which I likely won't know when It happens. I fill my brain with activity, researching and doing work to stop worrying about my pending fate, There is always a chance medicine might throw up some help. Read the other day there is hope for regenerating the nerves meylin coating through a new drug. Sadly not in time to help me but eventually it has enormus possiblities for many people. I have been in the end zone for some weeks now and I rely heavily on keeping the brain active, hopeful it doesn't have the time to try and shutdown. Likely won't work but it keeps me going. There is always hope, keep pushing for the answers which will then give you something to focus on.
Cheers.
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2 Reactions@cheyne
Thank you for that wonderful comment.
@chrisfd
Hi,
You are more than welcome. I tend to push everything as hard and far as I can with the belief they can't with hold anything from me as they are doing nothing for me anyway. I take the number of black marks against my name as sign I'm getting through to them, making them think about me. If I can't help myself, I can at least tell my story in the hope it may help anyone following. It has taken me the best part of a year to align all the dominos. I just hope no one decides to knock over the first one!
Cheers.
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1 ReactionI'm 62 yrs old and was diagnosed with MS multiple sclerosis in 2002. Many of your symptoms sound neurological to me and heat is not good for MS, symptoms are made worse. I think you should be evaluated by a neurologist to rule out any neurological issues. Advocate for yourself don't give up.
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2 Reactions@cheyne
That's a good way to look at it!!!
@ladybugg
Thank you for the info!!!
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