I'm back after 2 years with worse symptoms and I am really frightened

[Atsugi]

John, quick questions: 1) About your metabolism, which way is it going? 2) How do you measure metabolism?

 

[johnskip]

Yo atsugi I really am just asking for support that's all I'm a grown man who really took care of his body and know my body well I can injest thousands and thousands of calories where in the past weight would come right on me now it doesn't

 

[Atsugi]

John, don't misunderstand me. I'm not being a smart-ass. My docs talk to me all the time about my metabolism, and you seemed to have a grip on the subject, so I asked.

The tongue sounds like it might be "scalloped tongue." Look it up. Tooth-sized indentations with intervening white spots? I had it for over six months. Bothered me a lot. Even thought I had cancer. Eventually went away. Might have been caused by my mouth being "hyperactive" in a way. When I started a diet pill--a really good one--I also started sucking my tongue up against my teeth 24 hours a day. Not saying that's what you're doing, just presenting a possibility.

 

[johnskip]

Just venting again very very very sad and I'm on meds for my anxiety but it is not taking away my symptoms that are so concerning and stopping me from living just a few short months ago it's bazaar my story I know but I can't help but having a not so good feeling the way this is going to turn out my emg of my throat is a week away from today and I see myself declining daily especially my tongue atrophy and breathing i have 3 beautiful kids I'm just being honest I cannot disintegrate in from of them and ending it all never came across my mind never and I love life I'm that type of guy but if it's confirmed I would have to oregon and due death with dignity I'm sorry I am depressed majorly over this and have seeked out help but you guys are in my prayers and you show tremendous strength by carrying on and are my heroes to be honest

 

[Nikki J]

Whatever is or is not wrong with you neurologically ( I have nothing to say there except wait for EMG and Dr Patterson's opinion) you need urgent psychiatric help.

I can tell you from the FALS community I know several people who lost their parent to suicide and they do not feel spared of anything they were prematurely bereaved.

I just lost my sister whose daughter now 13 saw a 5 year decline in her mom that followed seeing her grandmother go through it in the years before. My niece would want them both back if she could. Kids more than anyone can accept people as they are. Your kids love you and need you

 

[johnskip]

I know they need me nikki thank you for responding

 

[johnskip]

I am having more and more breathing issues everynight sleep until 3 then can't breathe right after for 4 months I am worn down my tongue is wasting by the day and my throat feels so weird I know I'm not expelling co 2 right on my way to emergency room will I get an answer they have to keep me when they look at my tongue I feel I can't wait another week for emg with my breathing

 

[Atsugi]

Be sure to let us know how it goes. Good luck.

 

[Nikki J]

So what happened at the ED? Did they do ABGs? I see you have been visiting the forum so you must be reasonably ok

 

[johnskip]

Nikki I am not ok what are abgs? Well anyway here goes please give me some suggestion I don't know what to do i never went to er that day stuck it out feeling awful with breathing weird knowing my respiratory is laboring went to test for larnyx emg only doc in city who does this and I explained my concerns and she said this emg cannot tell that then I said aren't you going to do my tongue and facial area she said only throat and that a 15 to 20 percent weakness is a high normal especially in singers I told her I was not a singer she went on and found 20 percent weakness and she said she sees this weakness alot and she said there was a few fibs she would send it to my neourologist moving on I have been having no energy walking around like very gingerly when I do so I noticed this week that like my blood pressure was up after being In great shape never having a problem sure enough it was and I was getting dizzy picking up kids from school on Thursday I got dizzy driving thinking I was going to pass out went home just relaxed for a few hours tried to get up dizzy again had to call er blood pressure 165 over 110 went to er they did blood test found nothing let me go if it happens again come back meanwhile my whole body was in a tremor and I have been experiencing fasiculations all over my chest and back lately my stomach is cramping when I'm eating I don't have an appetite anything I do cramp if I use the muscle I am in a desperate desperate situation just to find out what I'm really sure I know already it is creating such a family disaster because everyone things I'm going to be fine because of 2 years ago no matter what I say they don't belive me and what to see proof it's awful I cannot tell you there is so many things my neck is killing me fasiculations on my face my jaw stays shut hard at night tremors and I have been taking a low dose of kolonopin and I have been sleeping better only to wake up exhausted headaches and high blood pressure I have a sleep study next week I'm tired of these test and I'm afraid that I'm going to die before or stroke before they diagnose me I my neourologist is moving way too slow I have an appt Wednesday in new York with mitsimoto he has 40 years experience now I know it's not showing in my limbs I feel I'm one of them weird cases

 

[Atsugi]

respiratory is laboring
having no energy
blood pressure was up
getting dizzy
whole body was in a tremor
fasiculations all over my chest and back
stomach is cramping when I'm eating
jaw stays shut hard at night

Not ALS. Very much anxiety.

 

[johnskip]

Anxiety makes things worse absolutely I'm sorry Mike I wish you were right my throat is cramping my voice changed there is no swallowing is difficult I'm sorry def pbp or bulbar als i have been suffering I know anxiety I got it

 

[johnskip]

And tongue atrophy!!!!!!!!!

 

[Nikki J]

I did not say you must be ok. I said reasonably ok. You are not in the hospital on a vent. You are apparently not on bipap, in a pwc or with a feeding tube. Around here that is pretty darn good.
ABG is arterial blood gas. They would prove/ disprove your co2 retention concern.

At this point there is no way to tell what is going on with you. Anxiety overlays anything physical. I will only say in my OPINION this doctor hopping is counterproductive. You saw one neuromuscular doctor you had previously liked because Dr Patterson was not immediately available. You did not like his response, then did see Dr Patterson who apparently is ordering tests and addressing the issues but too slowly so you are now seeing another doctor while Dr Patterson is in the midst of her workup. You are incredibly lucky to have Dr Patterson as your doctor. I think you should trust her to do what needs to be done. You are not helping yourself here and you are using a lot of scarce resources.second opinions are fine. I do not think simultaneous opinions are. You do not have to answer. I needed to say this and this will be my last post on this thread. You will do what you think best. Good luck

 

[johnskip]

Your right nikki God Bless everybody on this forum I'm having a real hard time me personally that's all