Pulmonologist appointment

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APL55

Active member
Joined
Jul 8, 2010
Messages
81
Reason
PALS
Diagnosis
03/2010
Country
US
State
Va
City
Woodbridge
I have to go to Richmond tomorrow to get an echo and some other things done with my pulmonologist,I'm not looking forward to the ride to and from. Every time I have gone out and rode for any period of time, the next day I feel worse than the day before. This has been like this for the last couple of years even before they told me I have ALS,I know this may sound improbale but it happens every time, but it does.The numbness and tightness and sensory thing's get worse, I'm worried that this ride will do me in. I know that sound stupid, but thats the way I feel.
 
Re: Worried about tomorrow

Hi al . . Hope your breathing has improved from the other day . . ? I know its easier said than done but try and relax . I know the respiratory /pulmonary tests can be exhausting so its natural to feel crap afterwards but try not to fixate on how tired your gonna feel cos it might fuel the fire . . Ironically i cant wait to see my respiratory doc. . Only 5 weeks 3 days to go and counting ! ! Lol . . I hope all goes well for you tomor and the unpleasant sensation you experiencein ease upand you have positive outcome. . Let me know how you get on . -All the best mate. . . . . Alex
 
Re: Worried about tomorrow

APL55:
Ditto Alex's comments and know you're not alone in this. If I'm going to be out and about on some adventure in our big old handicap van, I plan to take it easy for a day or two afterwards. Even with my comfy powerchair and a lift on the van, being out for an afternoon wears me out. Part of the issue for me is that our van has a high center of gravity and soft suspension that makes it bob and sway like a rowboat on the high seas - especially on the hilly, twisty country roads around here. Plus, my wife drives all over the road like a crazy person! ;-) It's still worth it for me though just to get out and see the countryside or whatever elsae we do.

Hang in there, friend and try to make the most things.

God bless,
David W
 
Re: Worried about tomorrow

Al&David..

The ride was also very rough on my PALS. He would be worn out for up to a week afterwards. Relaxing is much harder said than done. It wears out your system. We always tried to get them done then keep things at home quiet and relaxed for at least 2 days after an appt.
 
Re: Worried about tomorrow

hi cris . . Please dont think i was playing down how hard it is for pals to travel . . I was merely trying to help al get through with some comforting words . . His recent posts were of a bad few days and was trying to help his mindset a bit . . Sorry if i in any way caused offence . . Totally not my intention. . God bless
 
Re: Worried about tomorrow

alex scared

No Offence taken just trying to give a little perspective. This disease sucks sometimes. The least we can do is try to give advise and comfort of understandfing friends. We all look at this a different way. We never now which advise will help the best. I'm free with advise and take NO offence if cotrdicted or advise is NOT taken. Just want to help make PALS and CALS path a little smoother and less worrysome,

God Bless

cris
 
Well my fears were right, got up at 4 am for a little this morning and didn't feel to bad, then when I got up at 6 to take my meds I was worse than yesterday. I have a hard time believing this is progressing this fast. I knew today would be bad, but not this dam bad, my neck sounds like it's crushing stones. Well at least my test for my carbon dioxide stats were good and I get the result of my echo on monday' still no news from my neurologist about my neck mri, I'm just about done with this clown.
 
hi al . . Sorry your feeling so crap. . Good to hear that your carbon dioxide results were low . . And i hope your echo result comes back good for you . -I hear what your saying bout neuro . . They can drive you to drink! Try and stay positive and i hope you feel more comfortable soon. . God bless friend
 
Well some good news for a change, the echo came out a bit better than the last one and blood work was normal.My pulmonologist wants me to call him Wed if I haven't heard from my neuro,he's gonna take my disc of my neck and have somebody look at them. I'm also sending my info to John Hopkins so they can look at me.
 
You know sometimes the neurologists know just what they are talking about. They have trouble getting through to the over anxious patients, that all have self diagnosed themselves with ALS before they have even entered the room, thanks to the Internet.

Sorry but you must have noticed the constant stream of self diagnosed people all saying the neurologist does not know what they are doing. Statistically I would love to know how many of these people actually find out that they have ALS, let alone any neurological disorder?

The neurologist may not be in a hurry to get back to you because he does not think it is urgent and may have people that are dying that he is presently dealing with. These doctors have a life beyond the individual, work hard and most care an awful lot.

When the doctor fails to diagnose people with ALS isn't that meant to be a good thing? Why do people seem so dissapointed when they fail to do so?

Aly
 
Aly
I would agree with you to a point, but it's been 3 weeks,and I have called and left messages. If he's too busy or on vacation or working on it a phone call stateing so would be nice.If I would have treated people like that when I worked, I would have been out of a job, I just don't like being ignored.
 
Aly,
You miss the point. Allan's been diagnosed with ALS by this neurologist but we're trying to determine if some of his symptoms are being caused by his neck which he had surgery on in 2008. A simple 1 minute phone call from Dr. Vota saying yes or no is all we want. I think having a major disease like ALS warrants at least a return phone call. It's not like Allan is calling him 24/7 over every little thing.
 
aly ... I hear what your saying about neuros . . Everybody is entitled to life away from there work . . In my opinion a neuro life must be a stressful hard one . .they are normally highly in demand and As you said in your (excellent) post they deal with dying people and other emotionally demanding situations . . This is without mentioning all the years of training etc to get them there in the first place. . . BUT. . . . On the flip side they do sometimes seem to be a law unto themselves . . Would returning a call to a patient really hurt now and again ? To leave patient hanging 3 weeks does seem a bit poor . . People like us who are in need of regular neuro contact pin a lot on these meetings and calls . . To be left in the lurch makes you feel abandoned . . Not to mention that these guys are very well paid . . I think i have just gone the long way round saying that i am on the fence and see both sides . . The only thing i do know is i am sorry that any of us ever had need to visit a neuro in the first place . . . God bless . . Alex
 
Very good points. Sorry if i was abit strong in my comments. I think the clown comment set me off. No offenense.Sorry. I think our systems are very different and judging by how shocked locum neurologists are at the amount of work expected of them when they come here, maybe they do not work as hard. Theycertainly have higher wages over there. You would not be likely to get a phonecall here unless it was important, and yes now that I fully understand yours is extremely important.

Neurologists are a law unto themselves there is no disputing that. Its one of the hardest specialities, so they tend to be especialy bright with bright egos as well. Thats good for patients , most of the time.

Patients can be horrible on the doctors as well, and its usually the well ones that drain them,

Another sincere apology. Its 3am and I felt so bad I needed to get up and write to you. Bottom is spanked and I deserved it. Best of luck guys. I know its hard out there.
 
heir's no reason to lose sleep over it,everybody has their opinion,no offense was taken, I heard back from my neuros office and they said I show sugificant disc disease and I need to see a neurosurgeon, that was the phone call ,no lets set you up to see somebody,that shows how interested in me they are.
 
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