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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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@mister1
I'm not a doctor and only a specialist in nothing but I would suggest a quick trip to ED is the right move now.
I don't know if it happens to me as when the brain is shutting me down the eyes become difficult to open early on. I feel like I'm going to sleep as the limbs stop responding. Then the breathing starts getting shallow, the head falls down and then the breathing stops. Seconds later the brain realises what it has done and a huge tension of all the muscles as the body gasps for air a few times until respiration has been restored.
AS I said I'm not a doctor but that sound serious to me. But again, off to ED is the smartest option, let the experts help.
I have let my problem go for so long with a she'll be right attitude, I'm now fighting to stay alive daily. I have little control over the situation but just enough resistance to be able to distract the brain each time it decides to shut me down. It requires increadable will power that drains me even further.
If we don't take care of ourselves who will.
Take care
Cheers
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1 ReactionI hate going to the ER (remember I’m male 😆) unless I’m bleeding. Yeah, I understand we need to take care of ourselves. I have so many issues, if I go to a doctor I want them to look at my file so I don’t have to spill my guts every time for 10 minutes because it just sounds like complaining. Thank you for telling how you deal with your brain issues. I guess mine is just getting started. Keep up the positive attitude because it’s more fun to deal with people when they are smiling. Take Cres ❤️
@mister1
Hi,
As a male I'm only dying when I have a cold, when I have a life threatening illness, I'm OK, don't worry!
I find medical people have no idea of my diseases and how end stage affects people, granted it is rare and end stage, but you would think not knowing would send them to research what is presented in front of them. Too simple I guess.
Two more shutdowns foiled today, getting a bit frustrating now. I'll be pushing to be hospitalised until a J tube can be fitted, I need respitory support and a drip for the kidneys to stay alive. A feeding tube via mouth wouldn't go a miss either.
I have been able to get the cortex to over ride the brain, takes a lot of go juice and leaves me tired, but still alive and breathing. Small price to pay to be here still.
Sodd the complaining, you have to continually squeek to get the oil. I research everything so I can raise possiblities with the Doctors as they don't have the time to do what I can.
I don't let my dislike of medical people get in my way, I am focused on staying alive so anything goes to achieve what I need.
Take care
Cheers
So sorry to hear what you are going through.
I've had most of the symptoms you describe.
Mine are heart related and have had 28 TIA's (mini Strokes)
Also 2 stage 4 cancers with chemo, radiation, & hormone therapy
which has messed up internal organs.
Since this is on going, would suggest taking your symptom list to a GOOD doctor.
You may need to get a new Doctor.
Also If you pick your three worse symptoms and
approach the doctor with them.
Are you doing or taking anything to address your symptoms?
If there is a fix, I've found that 80% or more is what
the patient does not what the doctor does.