Update

[Guest guest]

Hello all

This group and Xolair have been invaluable to me in the last two years.

I have however, in the last month or so had some set backs, and my primary

care physician feels that it's time to reevaluate my treatment.

A few weeks ago I had posted questions to the group regarding Churg-Strauss

Syndrome. I greatly appreciate the response from everyone, and it is

something that we are going to be looking into.

In the meantime, my pc doc feels that my current respiratory/allergy doctor

is no longer controlling my symptoms well enough, and it's time to once

again involve the top respiratory doctors that I was seeing in nearby Boston

Massachusetts.

With regard to the Churg-Strauss questions, for years I have experienced

numbness in my arms, on and off. Most recently, my left arm began tingling,

and then went numb for several days. In the midst of the numb spell, on an

off, in the middle of the night especially I would go through episodes of

excruciating pain and aching in the same arm. I can't even begin to explain

the severity of it.

This past Monday, I had another episode of respiratory arrest at home in my

sleep. I woke with ZERO movement of my lungs, the were completely shut down

I had pins and needles all through my neck and head, and barely had enough

time to grab the epi-pen off my nightstand and inject. Thankfully, my

daughter heard me knock something over and came running into my room just as

I passed out. Because I've trained her so well, she immediately put my

pulse oximeter on, saw that it was 66 and then put on my oxygen and cranked

it full blast. She then called 911 because I was completely blue. She told

them that I had injected myself, and told the dispatcher that the paramedics

needed to know that my oxygen level was had been 66, was 71 now, and that my

heart rate was 188. Just then, I started to come back around, and my

daughter set up a nebulizer treatment for me, and went to go unlock the

front door for the paramedics. (I guess I should proudly note that my

daughter is 12 years old)

I was fine, released from the emergency room after a few neb treatments and

of course a demand to see my PC doctor that morning. My lungs were clear as

a bell.

This was the scariest episode yet. The paramedics said that with such a low

oxygen level, had my daughter not been there, and had I not trained her so

well, I surely would not have made it. By the time they arrived, my oxygen

level was back up to 87.

My primary care doctor is no longer convinced that my asthma is solely

allergy induced. I had no symptoms of true " inflammation " from the

emergency room report. I was not treated with any steroids and I left that

emergency room completely clear.

So, that is what is new with me. Strange, yet scary events with seemingly

no rhyme or reason. Trying to figure out whether the episodes with my arm

are in fact related to my lungs, because after going through my history, my

primary care doctor said that I have had severe asthma flares within weeks

of my arm acting up. Including these episodes of respiratory arrest.

So, I'm going to see my neurologist next week, and I'll be making an

appointment with the doctors in Boston soon.

Just to recap with you all, the only med I'm taking for my asthma other than

Xolair is Advair. I'm taking Topamax for migraines, and I have vicodin,

soma, imitrex, and phenergan PRN's that I rarely take for migraines as well.

I also take an oral contraceptive, but I don't feel that any of my migraine

meds contribute to my lung issues as my neurologist is a severe asthmatic

himself and carefully monitors all of this. I haven't had a migraine in a

very long time.

My weight loss is still going very well. My current weight is 175 lbs...

from a starting weight of somewhere over 300lbs. I never did know what my

max weight was as my bathroom scale didn't go that high, LOL.

Will continue with updates, and I still feel as if Xolair has saved my life.

This is the first episode of respiratory arrest in about 20 months, as

opposed to the many I'd had prior.