Any input tia

[bme999]

Does this sound like als

Hello wasn't sure where to post this but I'm new here im 42 but have severe anxiety and any advice would be greatly appreciated my brother in law just passed from als about a 6mo ago but I came here today because I have some very bad health anxiety and was hoping I could get some helpful answers from you guys

My issues started back in March with a lung infection I was a smoker but quit then I noticed that I had tightness in my chest so my doc put me on an inhaler symbacort that didn't help i was also having brain fog and lightheadedness and my arms and legs felt shakey normal blood sugar so she sent me for a chest ct and she told me that that I had copd well we tried another inhaler that seemed to help a little but then a week ago I was thinking it could be something neurological then I started noticing symptoms overnight maybe it's the anxiety but in those 7 days I noticed fasiculations all over my body I have had them for years but they weren't spread out like that

then I noticed tightness in my shoulders and forearms everyday maybe I slept on them wrong it kinda subsided but I also feel tightness in my front shin muscle and forearms then last night I noticed a cramping or sore muscle in my forearm right side arm that was hurting when I was sleeping and my tongue felt numb when I was sleeping but I took a xanax and that seemed to make the tongue numbness go away

but I still have lethargy and no energy everything seems to still work no atrophy balance is ok and fingers all work fine just the tightness in the fore arms and right leg and a little in back left leg and in the bicepts and chest and brain fog and all over twiching and a little tightness and shakey above the knee caps and I have noticed a weired felling in thumb joint almost like a cramp comes and goes maybe from all the googling. my arms feel heavy and fatigued after picking heavy stuff

am i going crazy or should I be concerned my doc didn't say much but my family thinks it's all in my head but I can barely work I'm so weak and I sleep alot I also found out today I have severe sleep apnea ahi of of 80 my oxygen drops to60% at night and I also have idiopathic sleep hypeventalation tia for any input

 

[lgelb]

You can't be getting restful sleep, which can relate to every issue you describe, with an AHI or O2 sats like that. If you meant "hypoventilation," that is part of sleep apnea.

So I'd wait until you've been on CPAP or BiPAP for a while, making sure someone is looking at your sleep data from the machine and fine-tuning your settings, and re-evaluate. It may be tough to get used to the machine, but it will really help.

 

[bme999]

Thank you for your reply I did get my blood work back today and it was albumin high wbc high and absolute neutrophils high maybe that has some impact on the way I am feeling also

 

[bme999]

Hello I did the sleep study and cpap machine helps a little now I noticed past couple weeks I have a dysphagia feeling and my throat pops and cracks everytime i swallow still have somewhat of a gag reflex I only like eating wet foods and the twiching is still there I go see a neurologist Monday but it's not looking good might bulbar onset starting

 

[lgelb]

I doubt it, as I said before. You just aren't describing ALS. Which is a good thing.

Give the CPAP time to help, fine-tuning the mask/humidification if your mouth is getting dry, and btw there are worse things than eating primarily wet foods to help maintain your hydration. If the issues persist, you could see an ENT, and I am sure your internist will be following your bloodwork.

 

[bme999]

I just woke up and I can barely use my legs it's like I just ran a marathon and I barely can get up the stairs how can it progress this rapidly

 

[Nikki J]

I have never heard of ALS with symptoms like you describe. You have an appointment tomorrow. Please let us know what the doctor says

 

[bme999]

Well I went to neurologist- she didn't seem to concerned with my symptoms even tho I expressed to her that it felt like my muscles were getting weaker and thinner and I noticed painful dents in my muscles allover. She did give me a order for emg, can't get in till aug-sept and she also sent me for a mri. I will post the results. She said it was OK. Do you think something would show up on the mri if I had anything?

TECHNIQUE: Multi sequential and multiplanar MRI imaging of the brain was performed on a high-field MRI unit prior to and following gadolinium contrast. Approximately 9 cc of Gadavist contrast was administered intravenously.
There is no midline shift, mass effect or acute intracranial hemorrhage.
There is no hydrocephalus or extra-axial fluid collections.
Signal void compatible with patency is seen in the major intracranial arteries.
No cerebellar tonsillar ectopia or Chiari I malformation seen.
There are no regions of diffusion restriction seen to suggest an acute infarctions.
Minimal scattered areas of T2 FLAIR hyperintensity in the subcortical white and periventricular white matter and to a lesser degree in the lower pons may reflect mild chronic small vessel ischemic changes.
Following gadolinium contrast there is no abnormal enhancement seen.
A few of the images are slightly degraded by motion artifact.
Within the visualized pituitary fossa there is no abnormal enhancement. Normal uniform enhancement of the pituitary gland and infundibular stalk is seen.
Optic chiasm is normal.The mastoid regions and sinuses are grossly clear without any air-fluid level seen.

IMPRESSION:1. No acute intracranial abnormality on MRI imaging of the brain with and without contrast. Specifically there are no focal intracranial masses or hemorrhage or acute infarctions. No abnormal enhancement seen.2. Minimal scattered foci of chronic small vessel ischemic changes in the periventricular and subcortical white matter bilaterally and to a lesser degree in the lower pons. No other findings of significance seen.

 

[lgelb]

A negative MRI does not mean that there is no ALS, though that is our opinion from what you have said. However, the MRI ruled out lots of serious illnesses like a brain tumor or stroke.

It did show that some of your little blood vessels in your brain are showing signs of aging. Over the years, those changes could cause real problems like stroke and other brain clots/bleeds. But at 42, you have time to slow that down a lot with a good real foods diet, plenty of sleep, dealing with stress, exercise, and staying a nonsmoker and light drinker, if any.

If you have COPD, that means there is real damage to your lungs, damage that smoking is a part of, but can get better if you keep from smoking anything at all. And of course, the CPAP will help your lungs work less hard to breathe, so I'd definitely stay with that. These are all things to work on while you wait for the EMG, that will pay great dividends.

None of this has anything to do with ALS.