Re: Breathing - I really need advice and help

[Guest guest]

Lenore,

Have you tried sleeping on your sides? it works for me and have been sleeping

on my sides for 4 years, I have CMT type 1, My diaphram isn't working properly

when I lay on my back and bend

over to tie my shoes, I was refered to sleep study last sept and

found out my oxygen sats drop to 68 and REM is noted at 6.1%

most all pulmo Drs are refering to the lungs and they diagnosis us

the wrong way, we have to be careful not to get sick cause there

is no way for us to vomit when our diaphrams won't open to allow

updraft otherwise, we'll become more sicker around the diaphram area.

Sincerely

Dennis

[Guest guest]

Lenore,

I am very sorry to read about the hell you have been

going through. It is even worse to not have answers.

Your health is your full-time job right now. It seems

that deciding to not go to the hospital is not a

choice that you are free to make at this time.

I believe that a doctor will have answers for you at

some point. It is the doctor's responsibility to find

out what is wrong, and going to the hospital when you

have symptoms reinforces that responsibility - even if

it means returning right after being discharged - this

is what they are there for and they should have

admitted you in the first place.

Chris

[Guest guest]

Hi Lenore,

I sympathize with your situation. My symptoms are very similar to yours. I'm

in the process of trying to get an accurate diagnosis and sufficient help

myself, but there are a couple of things right away that I can suggest.

1. CoQ10 at 200 mg per day. This has helped others and it was recommended to

me. It's not a cure, but I feel I can last longer without feeling the same

level of breathing difficulty.

2. Sleep on a wedge or raise the end of the head of the bed 5 inches. I'm in

the process of purchasing a wedge myself, so I haven't done this yet, but have

heard that raising the bed has helped others.

3. Do you have chest pain? I have costrochondritis from breathing too hard

with my chest to compensate for my diaphragm. Lidocaine patches down the center

of my chest have helped. I realized that the chest pain was also preventing me

from taking a full breath. When the pain was relieved, the breathing was a

little easier.

4. Get lots of sleep to rest the muscles and try to reduce stress. I find that

stress increases my need for oxygen, which I don't have to spare. I also find

that my muscles tighten, which causes me to also not take a full breath. Stress

is bad all around. A trip to the ER or any doctor telling me there is nothing

'really' wrong with me....I'm telling you...it's enough in itself to cause an

episode of severe shortness of breath. Focus on relaxing...your abdomen...your

back. Take a few deep...slow...long breaths....when you not the stress coming

on.

5. Incentive Spirometer. It's a little plastic device. It's less than $10.

You can get it at a pharmacy or order it online. I bought mine on amazon.com.

Use it for 2 minutes a day. It helps strengthen your breathing muscles. There

should be instructions with it. If not, you can email me and I'll give you

instructions. One word of caution: Sit up straight when using it and don't

breathe too hard with your chest muscles. I've pulled chest muscles using it by

breathing too hard and then wasn't able to use it for due to the pain.

None of the above are a cure, but they do help.

I still feel like I don't get enough oxygen. My pain management specialist is

very caring. He has researched this and does believe that the only way to get

an accurate diagnosis and therefore, accurate treatment, is to test the

diaphragm itself. I am scheduled for an EMG and nerve conduction study of the

diaphragm next week. My doctor also believes there may be some things, besides

oxygen, that they can do.

I can write you with the results, if you'd like. It will be a few weeks. I

trust my pain management specialist the most to help me with this problem. If

this path leds to anything that can help us, I'll give you his name. You can

have the doctor you trust the most contact him.

[Guest guest]

I completely agree.

Our disease is so misunderstood and misdiagnosis is so rampant. It's shameful on

the medical community, really, and it's so easy to give up...when we are feeling

so fatigued...and we are told so many times that there is nothing wrong or it is

in some way our fault.

But, please don't give up. Please continue to ask for answers.

Deep down, we know if a treatment is working or not and we know if something is

wrong. If the asthma medication or whatever treatment they are recommending

isn't working, please hold the doctors accountable. Go back. Ask questions.

For example, 'Will asthma medications help my weak diaphragm?', 'Aren't asthma

medications such as steroids designed to open up the airway in the lungs rather

than the diaphragm?' 'Assuming I have been taking the medications exactly as

prescribed, what else could be causing this problem?' Or whatever applies to

your situation. I don't know the exact details of your situation, but hopefully

the point is clear. Continue to ask questions based on your own situation until

you are satisfied with their answers.

The answers you get for yourself could save your life and the lives of many

others who have been misdiagnosed and are currently receiving incorrect forms of

treatment.

I will continue to push for answers in my situation and I will share my answers.

Sometimes I feel as if I could die suddenly. Should something like that happen,

God-forbid, I have asked my husband to make sure an autopsy is performed by

doctors who are familiar with CMT, even if my body has to be flown to Michigan,

and to make sure that the answer is spread to all of you and to the medical

community.

We have a long way to go before our disease is completely understood, but we

each can make a difference individually in our own lives and as a community.

Please listen to your own intuition and don't give up. You are your own best

health advocate. Keep asking questions. Hold them accountable. I'm standing

strong, right beside you.

[Guest guest]

,

Yes please tell me anything you find out. it

does seem like we have similar symptoms and I have

also tried similar treatments. Lidoderm patches have

helped with what I call the " lung pain " if i say chest

pain people confuse it with heart attack type

pain,,or heaven forbid anxiety. I had no idea that

the pain had a name,or what it was really. I didn't

know my diaphragm wasn't working properly until last

month.

I have been using my bipap as an incentive spirometer.

I cant suck hard enough (i know sounds hilarious!) to

use it right now. the bipap forces my lungs to open. I

have also used an acapella acopella can't think of the

spelling, device. it flutters to help palpitate your

lungs to get secretions up. I cant cough hard enough

to get anything up,they don't see productive stuff

then they think its anxiety not infection! I can get

some up now but i am not in the hospital now! but that

was another device given, it acts like when someone

pounds on your back to help get things moving. it

helps a little but is VERY tiring.

I do have a pain management specialist, they have not

tested the nerve that controls your diaphragm. They at

least helped me with the over all pain by giving me

fentanyl and percocet for breakthrough pain in my

legs. I deal with a lot of pain every day and do try

to rest but feel guilty because I am a mom, Navy wife,

homeschooling mom. I don't want to appear lazy. I know

how silly it sounds but its how i feel!

I will try the COQ, have taken it before but will try

it again.

Thank you again !!!! keep me or us posted!!!

Lenore

[Guest guest]

I am seeing Dr Bertorini. I saw him last month. He is

the one who had the sleep study scheduled. When I am

well I look pretty normal, with a limp LOL. I am not

one of his most severely damaged patients and get

overlooked until i get ill. I am scheduled to see him

again next week. I am hoping to see if he can further

test me. He also didn't want to medicate me for the

nerve pain. he told me to go to a pain management dr

for that. the pain management people want me to go to

my neuro for it. The other 2 doctors you mentioned are

part of that group that will not accept my insurance.

Cleveland sent the info to Dr Bertorini but because

they haven't firmly diagnosed me, it's like i am in a

state of limbo. I have to see what he will say next

week. I am hoping he can suggest more testing to pin

down a diagnosis. things are failing fast and i need

to be diagnosed properly. It's just frustrating because

he wasn't going to see me again until February. I can't

get any services though the MDA until they diagnose

me.

The thing is though. Even Dr Bertorini, who heads the

MDA chapter here, is a good neurologist. He #1 also

took back his own diagnosis preventing me to get

treatment and #2 feels that the pulmonary issues

should be dealt with a pulmonary physician. the

problem there is that the pulmonary Drs don't

necessarily think of the diaphragm as within their

scope of treatment. I keep getting pushed from 1 Dr to

another and no one knows how to treat this! thank you

for all of your help again Gretchen!!!!

Lenore

[Guest guest]

, why fly to michigan? I have felt the same way

though, afraid that I am just going to stop breathing.

I couldn't believe they discharged me when I told them

I wasn't sure that I was going to wake up if I fell

asleep. It is scary when it gets that bad. Thank you

again!

Lenore