a nightmare

[johnskip]

Really dissappointed in alot of the neurologists in the penn amd jefferson hospital system o was told I was fine and I.shoild seek psychiatric help by 3 of them and I sae 6 total this summer they all blewe of because all emgs were good but I told everyone of them that my breathing was affected all of the sudden it is so obvious and a no brainer got a pulmonary test done at penn showing low respitory muscle strength and becaise my mvv was good they passed me on it and I told these neuro just to have anything low is vrry rare because of my the physical shape I was in only to get another one at jeff to show mvv and muscle function low and they still sent me to pulmonary and the pulmonilogist said I have the lungs of a twenty year old your problem is neourology baseitching going back to docs all over again starting this week so frustrated my muscle twitching has increased bigtime any advice on getting there attention its a no brainer to me that somethong is drasticallt wrong 3 months and back to square one these are top neurologist what a joke nobody goves a dam

 

[Clearwater AL]

As you wrote, ("Really dissappointed in alot of the neurologists in the penn amd jefferson hospital system o was told I was fine and I.shoild seek psychiatric help by 3 of them...")
That's three, you've seen six... see three more and you'll have an even dozen. But... a much cheaper way is to believe the three that told you - "you do not have ALS."

At this point... why not see a psychiatrist? He could possibly tell you that is not all in your head and refer you to back to neurology.

 

[Kosmoskatten]

I have backtracked and read all your posts here on the forum.

Let me see if I have this correct;
- You got a pulmonary test done at Penn showing low respiratory muscle strength. But your MVV ( maximal voluntary ventilation ) through spirometry was good?
- Then when you visit another pulmonologist again your respiratory muscle strength is deemed sufficient?

When you did your pulmononary tests att Penn, which parts of your testing was not good, VC? FVC? etc. This should be showing in your report.

It is contradictory that the pulmonologist tells you; "You have the lungs of a 20-year old" and yet says "You have a neurological problem". If you would, which I presume you are aiming at, have respiratory onset ALS this would clearly show on your pulmonary testing.

What I would recommend you is to start seeing a therapist for the health anxiety you are feeling. Even if you do have a physical condition ( which does not in ANY way sound like ALS) it is important to manage anxiety to see which symptoms subside and which remain. This also makes it easier for you to communicate with your neurologist as a patient.

And, for your own good, when writing things like "nobody gives a damn", do not turn to an internet forum that will only exarberate your anxiety, turn to your family and friends and to a professional therapist. Staying here will only make what you are feeling worse; we are no doctors, and we cannot help you further.

Good luck!

 

[johnskip]

I understand that nobody is doctors I am just explaining my situation that I have been extremely concerned and yes it is making me miseeable and yes I am seeing a therapist and a psychiatrist and yes I do have the utmost respect for anybody who has als and fighting it with all they got my fvc fev1 diffusing capacity lung volumes are normal tje mip and mep are below the lower limits of normal and the significance of this needs to be put in context of the symptoms and presence of neuromuscular disease thats what my report says

 

[johnskip]

I understand that nobody is doctors I am just explaining my situation that I have been extremely concerned and yes it is making me miseeable and yes I am seeing a therapist and a psychiatrist and yes I do have the utmost respect for anybody who has als and fighting it with all they got my fvc fev1 diffusing capacity lung volumes are normal tje mip and mep are below the lower limits of normal and the significance of this needs to be put in context of the symptoms and presence of neuromuscular disease thats what my report says

The reason why I know something is wrong because I am an exercise and basketball phanatic for 35 years and all of the sudden I cant catch my breath I cant even breathe right at rest!

 

[Dusty7]

Your symptoms don't sound like ALS. Time to leave this forum.

 

[johnskip]

back to square one

Just got back.from penn als doctor for 20 years experience and showed him the pulmonaru function test results showing respitory muscle weakness and he said well you seen the other docs and the leg and arm emgs are good so you dont have als I said great doc why am I getting so out of breath doing the littlest of things he said he has no idea and I dont know what it is bit did you see a psychiatrist yet? I said yes I did then I said is there anyway you can do an emg on the intercostal muscles he said we dont do them anymorebecause we might puncture a lung why you think you have respitory onset I javent seen a case yet you never know doc I dont know why im breathing this way he said well if you did we cant do much for you anyway well doc im also having trouble prpjecting my voice can you do a bulbar emg he said we dont do that only if we find something in arms and legs well what can you do you I cann send you for another pulmonary function test I said ok then he said if you do have als time will tell and I said I would think so I.guess I have to accept im not going to.get any answers about my respitory muscle weakness my twitches all over his my voice weak

 

[Dusty7]

No, but the good thing is you don't have ALS. Seek your answers elsewhere. This Forum is for ALS.

 

[johnskip]

Finally a neourologost who listened to myconcerns and spent alot of time with me from jefferson university of philadelphia he is doing a full body emg intercostal muscles included and bulbar to end my this nightmare once and for all im hoping and praying I dont have go join u guys but let me tell you this honestly I pray for all you guys everyday

 

[johnskip]

Did anybody take an oxygen desaturation test with exercise? I have one tomorroe

 

[Atsugi]

John, it's well documented you don't have ALS. I've been following your posts and I know you don't have ALS.

You say you respect the people on this forum, but you don't. You continue to use up our resources to support yourself.

Time to leave. Get your support elsewhere.

 

[johnskip]

Atsugi I absolute do respect everyone in this forum and especially everyone fighting each and everyday please your thinking is way off base as far as my situation goes all I know is that there many many changes in my body most noticable my respitory muscles that are well documented along with cramping muscle twitching the feeling of carrying an extra 50 lbs on me in everything I do I believe they are legitimate symptoms im not one of these post als bucket challenge people panicking I know my body well real well there is something going on with me and im praying everyday that it is not neouromusclar but I am not stopping until I find out I was at a top neourologist today her name is terry heiman she is one of the top neouromuscular people in philadelphia she is very concerned and has ordered many many tests and she does have 36 years of experience

 

[MaxEidswick]

Well -- Several of us have tried to share our experience with you and your fears.

The consensus seems to be that you need to resolve your issues with medical professionals and/or do not have ALS.

We do empathize with your fears, but there is no more we can help you with at this time.

This note is not to deter you from your investigations, but just not on this forum.

You asked, we answered, so please move on.

If you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!

Anxiety can be a real problem that can endanger your physical health. Make sure you tell your medical practioner what you are feeling as well as how you are feeling.

No need to reply. Goodbye and best regards.


-----
Max
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

 

[johnskip]

I love people the way people try to bullie you off this wonderful.SUPPORT forum I think people should re think what support means and I totally understand taking up peoples precI'll us remaining time you act like im postinv everyday without a diagnosis its sad what goes on here

 

[MaxEidswick]

>its sad what goes on here

yes, it is sad ... we have lost several of our valued members these past few weeks. do you know of them ... or just yourself?