Hi Ally,
I hope I've found the answe too. Yes it is definitely a scary disease.

I will Google Sjogren's and see if any of those symptoms seem farmiliar to me. When they first diagnosed me they tested me for other autoimmune diseases to see if that was the cause and they all came back neg. I can't say for sure that I had the air diffusion test but I'm guessing I did. They gave me so many breathing tests I was exhausted when I left there that day. I do know all my breathing tests came back abnormal. My problem was discovered when they sent me for a CT scan to check for a thymoma. That came back fine but they said they were seeing something abnormal. They sent that to my Hematologist who said he was referring me onto a Pulmo but that it was some sort of scarring in my lungs. The pulmo described it as looking like pieces of crushed up glass throughout my lungs. When she showed me the CT scan they are little whit places, almost look like little bone fragments. She is who originally started me on Pred to see if it improves. I go in this Fri. for my follow up CT scan. If there is no improvement they want to do a lung biopsy. I haven't had one yet. My fear is that if it is related to the Agrylin there won't be any improvement yet. Although hopefully I will see my Hematologist before then and will know more.

Yes you are right that ILD is used for several different lung diseases. My Pulmo said there are 3 different catagories, one is where it is caused by exposure to something that has damaged the lungs like chemicals, dust, etc., then there are the autoimmune related cases and the third is the ones they cannot find a cause for. I hope I am remembering all this right. I am still fairly new into this myself and am so hoping I have found the cause.

Yes we certainly do have to check and recheck!!! I think part of the problem at least in my case is when you have so many Drs. and each treats something different. If they don't make sure they all work as a team it can cause some serious problems.

What kind of symptoms are you having? I didn't have many symptoms except shortness of breath that I hadn't had before and my heart seemed to race with very little exertion. I knew something wasn't right but never dreamed it was anything like this.
Kendra

Nicky,
I am so scared to get my hopes up that this is the cause of the MG but am almost certain it has brought on the ILD. I totally agree even if the ILD reverses it would help tremendously!!! I am keeping my fingers crossed that the MG will get better or go away too now that I'm off the Agrylin. I'll update everyone once I talk to my Hematologist today.
Thanks
Kendra

Good Luck Kendra! I'll be keeping good thoughts.

Kendra,

I am glad you figured out the possible connection with your medication.

I found my old blood tests (I had my blood tested every year at my previous job since I worked around hazardous chemicals) and my platelets ranged between about 300,000 and a little over 400,000. The normal range according to my test paperwork is 140,000 to 400,000.

I am curious what my current platelet count is and will ask to get it tested next time I need any other kind of blood test.

There are lots of things that cause platelet counts to go up: high elevations, birth control pills, infections, inflammation, anemia, Lyme disease, allergies, etc...some of the causes are serious and others will go away on their own.

I am not a doctor of course, but I wonder if it is possible to figure out the cause of your high platelets and treat that rather than the high platelets. Do you know what is causing the high platelets?

I hope the aspirin will work for you.

Desert,
I'm glad you found your old lab results. 400,000 isn't bad at all. You are right that normal is 150,000-400,000. When you get labs drawn again I am curious to see if they have changed too. Please keep us posted on that.

The Dr. is pretty sure my blood disease is genetic. My mom had one also as well as my grandpa. My moms turned into Milofybrosis which ultimately caused a blood clot that she died from so my Dr. takes mine very seriously due to family history. There is a chance mine can turn to Milofybrosis also but so far I have had no progress with the platelets going up.

My Hemo called me tonight and told me he was so glad I stopped taking the Agrylin. He told me not to take anymore and just take an aspirin everyday until I see him next week. He will then run my labs and we'll figure out a plan.

Are you feeling better? I hope your bronchitis is clearing up!
Kendra

I am feeling a little better every day, but still I can't take in a full breath.

Thank you.

Hi Kendra,

I really, really hope getting off this drug stops the ILD in its tracks. My understanding is that having a reason for the disease is a good thing because then you know how to turn it off. Sorry to hear about your ct scan results. That must have been some scary news.

To answer your question about my symptoms: I had about a year of very red eyes which ended about 6 months ago. I always have some strange symptom going on though, so it was just one of many odd things. I did have them check it out at the mayo and they said it wasn't due to an infection. I started having dry eyes again, without the redness, a few weeks ago so I was googling away when I saw a reference to Sjogren's and dry eyes and parotid glands. Well, I took notice of that because my parotid glands have been very swollen lately, to the point where it's been visually noticeable. I dug a little further and discovered that Sjogren's can cause ILD which was also interesting given my abnormal diffusion tests. I sort of tucked all that under my belt to think about, and then I got the medical records from my hospital stay and noticed that my sedimentation rate was high. Which is another red flag. (And of course nobody told me about the abnormal lab result). I couldn't get my gp interested in the swollen parotid glands so I booked an appointment with a rheumatologist who has a very good reputation. He usually sees first time patients for two hours and actually sat with me for three if you can believe that. He's a saint! And he knew more about myasthenia gravis than most neurologists I've seen. Anyway, he said he was inclined to think I didn't have Sjogren's because I don't have a dry mouth but he's running the antibody tests which are only positive 70% of the time. So if those come back negative he's going to send me to an ENT.

Anyway, do any of those symptoms sound familiar to you?

Oh, and yes, I have breathing problems on exertion too, but I'm not convinced yet that all that isn't caused by mg. Especially since mine comes and goes.

Hang in there, you've had really discouraging news but you could well have figured this all out on your own!! Good job for keeping your eyes open. Yay!!!

Ally