Need advice!

[Tylerneedssupport]

On March 28 a little more than four months ago i started experiencing fatigue in my neck. I also noticed that solid and dry food seemed to get stuck in my throat after i swallowed and was very uncomfortable. As time went on i noticed i would wake up with my limbs feeling very weak, but it would go away as i went about my day. I lost weight too even though i have been eating every day. I went from 170 lbs down to 160 lbs so 10 lb loss in four months. I weighed 196 lbs back in December so altogether i have lost almost 40 lbs. Starting toward end of May i started experiencing loss of balance walking. The further i walk the worse it gets. Now i ride my bike because when i walk i get this sensation like i am going to faint and i feel unsteady on my feet and just lightheaded. Something that started recently is twitching in my feet, the need to sit down after more than a couple minutes of standing due to fatigue in calves and feet, hands feel weaker, i feel cold accompanied with lower than average body temp, and i feel short of breath when lying down which makes it very difficult to stay asleep at night. That same weak feeling in my hands i can also feel in my mouth, tongue, and neck. Twitching has been increasing everywhere and i just feel overall tired and fatigued.

So does this sound like typical onset of ALS or no? Is it typical for ALS to effect the respiratory muscles four months in but still no slurred speech? Could i feel cold all the time because my muscles are atrophying? I was tested for anemia and hypothyroid and they were both negative. What about the balance issue? I notice in the shower when my eyes are closed i feel like I am wobbling back and forth. Today my doctor used an instrument and hit both of my knees and told me that was normal. I also recently had a treadmill stress test that my doctor watched me do and he said that based on what he saw he doubts anything neurologically is wrong, but he did refer me to a neurologist to be more safe than sorry. I see neuro on Aug 29. I am a 24 year old male. No family history of neurodegenerative disease, but my dad thinks before my great grandpa died he had dementia. Alzheimers was never confirmed though. Cause of death was leg infection while he was in nursing home.

 

[Atsugi]

There is not a single word in your post that has anything to do with ALS. Very serious--not one word.

Stick with your doctor--he'll find the cause and the cure for whatever bothers you.

 

[Tylerneedssupport]

Thank you for your reply. Well i do see the neuro on Aug 29. Perhaps i am getting twitching every day cause i sleep poorly, but the reason i sleep poorly is because i have cold intolerance and i feel short of breath. I wake up constantly to catch my breath and it feels like my breathing muscles don't move up high enough and plus when i drink liquids i get the urge to cough and im noticing changes in my voice. I should also mention i have mushy yellow stool and nausea.

 

[ShiftKicker]

Tyler, no one needs to know about your bowel movements here- ALS is not a bowel issue. It is a neurological issue- which Mike has already assured you is not a likely cause for your health concerns.

 

[WendyWooG]

Tyler,

You obviously have a lot going on and a lot of anxiety about your symptoms, I sincerely hope that your doctor has some answers for you soon. Your symptoms don't sound at all like ALS which hopefully should reassure you.

Try sleeping in a more upright position with lots of support and try some relaxation techniques before bed.

Good luck

Wendy

 

[Clearwater AL]

You might check back with your doctor and discuss a possible immune disorder. A walking stress test is usually done by a Cardiologist after an EKG and an EKG during the test.

Yet, you wrote... "I also recently had a treadmill stress test that my doctor watched me do and he said that based on what he saw he doubts anything neurologically is wrong" but referred you to a Neurologist. ?

Whatever... see what the Neurologist says. Let us know after the Neuro visit.

 

[Tylerneedssupport]

You might check back with your doctor and discuss a possible immune disorder. A walking stress test is usually done by a Cardiologist after an EKG and an EKG during the test.

Yet, you wrote... "I also recently had a treadmill stress test that my doctor watched me do and he said that based on what he saw he doubts anything neurologically is wrong" but referred you to a Neurologist. ?

Whatever... see what the Neurologist says. Let us know after the Neuro visit.

Yes I will update after I see the neurologist.

 

[gooseberry]

Remember.....poor diet, poor sleep, too much caffeine, being dehydrated can cause many similar issues.

Are you sleeping well for 8 hours a night?

How much caffeine or energy drinks do you consume?

Do you drimk water? 100 oz a day?

Are you eating healthy food...fruits, vegetables, lean protein?

I would start here. If your sleep is that bad, sleep apnea can cause a lot of issues. See a pulmonologist who can address your breathing and can order a sleep study.

 

[Tylerneedssupport]

Remember.....poor diet, poor sleep, too much caffeine, being dehydrated can cause many similar issues.

Are you sleeping well for 8 hours a night?

How much caffeine or energy drinks do you consume?

Do you drimk water? 100 oz a day?

Are you eating healthy food...fruits, vegetables, lean protein?

I would start here. If your sleep is that bad, sleep apnea can cause a lot of issues. See a pulmonologist who can address your breathing and can order a sleep study.

When i fall asleep i end up waking up typically 4-6 hours later and i find it difficult to stay asleep. I wake up frequently having to take deep breaths to catch my breath. I don't consume caffeine, and all i drink is water and milk sometimes. I am eating a basic healthy diet with sufficient calories to maintain my weight. However, i should mention i had a surgery by the ENT back in March called a septoplasty and shortly after is when my symptoms began such as nausea, dyspepsia, early satiety, decreased appetite and fatigue. The balance difficulties began in late May. On May 21 my girlfriend smacked me in the back of the head with her palm when i wasn't paying attention when we were arguing and i am wondering if that could be causing some of these symptoms like disequilibrium/lightheaded/feeling like i am going to faint (dizziness except no vertigo) which worsens upon exertion? Cold intolerance began in June.

 

[lgelb]

The symptoms coinciding with the surgery makes me wonder if you could have a post-op infection/inflammation/virus -- I'd see an internist for an exam and labs. But you're in the wrong place here.

Best,
Laurie