Aa
I am still Breathing
Well barely. Man I am not sure how many of these diaphragm attacks I can take. I am stoic but it was Saturday and I am so weak and my lungs hurt still. I was supposed to ride twice this week but I canceled. All my Doctors are blowing me off. I guess I have to stop breathing next time. My PCP says my MS Specialist has to deal with it. The MS Specialist did not deal with it in November and bumped my six month appointment in February to his PA. He is booked for all of 2011 as of November 2010. I called this week and was told I would hear back nada. Since 2006 how many times have I called a Neurologist between visits only twice. For the same thing in three months so I am not a habitual caller. If I do not stop breathing it does not count. But if I do stop breathing the point is moot at least for me.
Thanks for letting me vent since it is easier than breathing.
Alex
Thanks for letting me vent since it is easier than breathing.
Alex
Hey Alex, I'm so sorry you have been going through this, you have been an inspiration to many of us and it's time you caught a break.
Mand
Mand
Let us just say I know too much about Medicare and do not want to be on it and leave it at that and I do not need SS.
Alex
Alex
I didn't apply for SSDI because I had no dx. Well, except a pinched nerve according to the first neuro. Last year when I was finally dxed, I applied. It had been six years since I held a job. So, while the papers say that so many units have to be put in the last five years, it doesn't necessarily mean you cannot get benefits. They just backdated mine. Might be worth a try.
thank you for sharing so much with us Alex, you have been through so much. The mental health system is so broken and twisted, it just devours and chews people up. It's a miracle and testament of your strength that you were able to get yourself out of it. Amazing!
I really appreciate the fact that you share so much with us Alex. It helps us understand you better and hopefully will help others to open up.
You deserve to be treated with respect and compassion from your doctors Alex. I don't know why you haven't been heard but am hoping that things will turn around for you very soon.
((((hugs))))
Red
I really appreciate the fact that you share so much with us Alex. It helps us understand you better and hopefully will help others to open up.
You deserve to be treated with respect and compassion from your doctors Alex. I don't know why you haven't been heard but am hoping that things will turn around for you very soon.
((((hugs))))
Red
I've often found canine companions to be the best listeners anyway. I'm guessing that being deaf would have little impact on that.
I am staring to feel better. Had a good rant with my therapist. Everyone should have someone they can go and let of steam with. At least Polly never has to hear me rant. The benefits of being deaf.
Thanks everyone. We will all survive!
Alex
Thanks everyone. We will all survive!
Alex
Alex,
You are so strong! Your history and strength reminds me of the lyric from Queens "We Are The Champions":
"I've had my share of sand kicked in my face -
But I've come through"
You are in my thoughts, Alex. I hope you catch a break and start feeling better soon! ((hugs))
~Jess
You are so strong! Your history and strength reminds me of the lyric from Queens "We Are The Champions":
"I've had my share of sand kicked in my face -
But I've come through"
You are in my thoughts, Alex. I hope you catch a break and start feeling better soon! ((hugs))
~Jess
No I can't get disability you see I stopped working Veterinary years ago not knowing what was wrong with me. I was going to be an artist and the art market fell out so I have not been making any money at it to pay into SSD.
In the mean time my first Neurologist in 2007 was leaving his practice when he thought I had MS did not put that in the notes. The second Neurologist said clearly I did not have MS, she would not look at the tests. My third Neurologist does not consider me disabled. Years later I get a diagnosis but it is out of the time period of working and paying into SSD and the documentation is a nightmare. For years they thought I was mentally ill but I got fed up with that so I made sure my medical records disappeared. Now lots of Doctors have closed practices or are dead. Plus since I did not know I had MS and I worked all those year proving I could.
I could of had SSD handed to me years ago but turned it down. I did not want to live off the government when I could work and had great insurance. I used to have surgery and pay next to nothing. I thought I could apply later if need be. Then the rules tightened up. It is mostly documentation and I just do not have it. My Neurologist saying he thinks I had MS my whole life is heresay in court. My parents are dead and I do not have my Navy Record. I probably with a lot of trouble could retrace all the hospitals in many States.
I really do not want SSD anyway.
Alex
In the mean time my first Neurologist in 2007 was leaving his practice when he thought I had MS did not put that in the notes. The second Neurologist said clearly I did not have MS, she would not look at the tests. My third Neurologist does not consider me disabled. Years later I get a diagnosis but it is out of the time period of working and paying into SSD and the documentation is a nightmare. For years they thought I was mentally ill but I got fed up with that so I made sure my medical records disappeared. Now lots of Doctors have closed practices or are dead. Plus since I did not know I had MS and I worked all those year proving I could.
I could of had SSD handed to me years ago but turned it down. I did not want to live off the government when I could work and had great insurance. I used to have surgery and pay next to nothing. I thought I could apply later if need be. Then the rules tightened up. It is mostly documentation and I just do not have it. My Neurologist saying he thinks I had MS my whole life is heresay in court. My parents are dead and I do not have my Navy Record. I probably with a lot of trouble could retrace all the hospitals in many States.
I really do not want SSD anyway.
Alex
gosh Alex I'm sorry!
I'm with Kelly on the disability though---perhaps an attorney could help
Red
I'm with Kelly on the disability though---perhaps an attorney could help
Red
So, you spoke to your neuro about it in Nov, and he did nothing? My grandma always tells me that CO has the worst doctors (all my mom's side of the family lives in Chicago). I think NC is giving us some good competition for our title.
Can you increase your Baclofen, until you go see his PA in Feb?
Are you sure it's not the MS hug or a sudden onset of asthma or something?
I hope the spasms go away soon! I can't believe that someone like you cannot qualify for disability. We are talking about SS disability, right? That's unacceptable. :-(
-Kelly
Can you increase your Baclofen, until you go see his PA in Feb?
Are you sure it's not the MS hug or a sudden onset of asthma or something?
I hope the spasms go away soon! I can't believe that someone like you cannot qualify for disability. We are talking about SS disability, right? That's unacceptable. :-(
-Kelly
Red
No because I have a house they will not write off my debt that is the point. Basically they have something they can put a lien on. They write off debt they know they can not collect on people who can just have it sent over to collections with no real fear of reprisal other than bad credit.
I have probably been disabled since I was two but I do not qualify for disability as the laws are written.
I will survive I always do.
Alex
No because I have a house they will not write off my debt that is the point. Basically they have something they can put a lien on. They write off debt they know they can not collect on people who can just have it sent over to collections with no real fear of reprisal other than bad credit.
I have probably been disabled since I was two but I do not qualify for disability as the laws are written.
I will survive I always do.
Alex
For some reason I thought you had medicare and disability. Can they 'write-off' some of your debt?
Red
Red
The ER will only do me good if I am in an attack which will probably be over by the time I get there and get seen. Then they will say you need to see your Neurologist. Then I will get a huge bill I can't pay for my effort. If the ER would help I would go. Even my Doctors tell me the ER will do nothing.
The economics of health care are simple Hospitals have to make up for the money they lose from Medicare patients and those with no insurance or who get financial aid. This money does not come from the Government or State. It comes from me and others like me. I have $8,300 deductible with my group plan this year so the hospital adds the extra burden after my insurance pays on me. I have to pay at least 60% of my medical bills until my deductible is met. Copays do not count towards the deductible. I own a house so I can't simply let it go to collections. It is perfectly legal and good business sense. It does not matter that my income is right over the line of assistance myself.
Alex
The economics of health care are simple Hospitals have to make up for the money they lose from Medicare patients and those with no insurance or who get financial aid. This money does not come from the Government or State. It comes from me and others like me. I have $8,300 deductible with my group plan this year so the hospital adds the extra burden after my insurance pays on me. I have to pay at least 60% of my medical bills until my deductible is met. Copays do not count towards the deductible. I own a house so I can't simply let it go to collections. It is perfectly legal and good business sense. It does not matter that my income is right over the line of assistance myself.
Alex
Alex, you are definately not a complainer. You have the most incredibly positive attitude that is infectious. We all have benefited from your warm and comforting words.
It sounds as if you need to take this to the next level to get the attention you desperately need. If you cannot get in to be seen through the normal channels, then do the ER route. And please don't wait to long!
Julie
It sounds as if you need to take this to the next level to get the attention you desperately need. If you cannot get in to be seen through the normal channels, then do the ER route. And please don't wait to long!
Julie
Thanks. I would rather my PCP and Neurologist would try to help before there is a next time. It is a stupid medical system if your patient has to go into crisis before something is done.
It would be like if my mechanic said I won't do a diagnostic on your car when the warning light comes on or fix the problem you have to blow the engine first!
Alex
It would be like if my mechanic said I won't do a diagnostic on your car when the warning light comes on or fix the problem you have to blow the engine first!
Alex
Alex, are you frickin kidding me.
It's unexceptable the office not getting you in. You did the drill, i.e., went to the pcp, pcp says the specialist. Will the PCP call the specialist and ask you be seen asap??? If not, def. go the ER route, you've tried the others.
It's unexceptable the office not getting you in. You did the drill, i.e., went to the pcp, pcp says the specialist. Will the PCP call the specialist and ask you be seen asap??? If not, def. go the ER route, you've tried the others.
I asked Bandit, and to be frank, he didn't seem to care. Annie either. A heavy sigh was their most significant response.
However, I will join the chorus of all of the above. There's a time and place for ER, and extremely difficult breathing is pretty high up on my list of reasons to get yourself there.
Praying for relief.
However, I will join the chorus of all of the above. There's a time and place for ER, and extremely difficult breathing is pretty high up on my list of reasons to get yourself there.
Praying for relief.
(((Alex))),
So sorry about your pain and difficulty breathing. I too, would go the the ER to avoid a possible like threatening disaster next time. I so wish this wasn't happening to you. Just not fair sometimes, and you my friend, could use a break.
Thinking of you and sending hugs and strength to you,
Michelle
So sorry about your pain and difficulty breathing. I too, would go the the ER to avoid a possible like threatening disaster next time. I so wish this wasn't happening to you. Just not fair sometimes, and you my friend, could use a break.
Thinking of you and sending hugs and strength to you,
Michelle
I agree with everyone here. It is time to get this evaluated in an ER setting. They will get to the bottom of it before any of your doctors. This is even more important now that it is happening more frequently.
The first hint you are going into one of the spasm, head diretly to the ER so they can see what is happening.
Keep being the strong person you are.
Julie
The first hint you are going into one of the spasm, head diretly to the ER so they can see what is happening.
Keep being the strong person you are.
Julie
Alex, The insurance and medical costs is a big factor for you, but a trip to the ER really may be a wise step for you. Everyone is right that this might be something else.
I hate that you are having such pain and discomfort.
wishing you well, Lulu
I hate that you are having such pain and discomfort.
wishing you well, Lulu
I'm thinking the same thing. I hate hospitals, doctors, clinics, and anything having to do with being sick, but that's just not casual. MS can mask other symptoms - I had a blood clot that I believed was just bad spasticity.
HVAC...have you had any tests done to determine if it is the diaphragm? I had one called a SPIT (not sure of sp). The reason I ask...what is it is not the diaphragm and another problem? I just think I would go to ER next time.
that just sounds awful Alex. I hope you get answers soon. Since it is a spasm do your muscle relaxers help?
If you can't get enough air you need to call 911! Since your doctors aren't helping you, let the ER treat you and have them fax the info to your doctor. The fact that they aren't listening is not OK.
Let us know what is happening.
Red
If you can't get enough air you need to call 911! Since your doctors aren't helping you, let the ER treat you and have them fax the info to your doctor. The fact that they aren't listening is not OK.
Let us know what is happening.
Red
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