Went to the ER and everything is okay with my lungs. They did blood tests, x-rays, cat scan and a few other tests. But of course they have no idea as to why I am having pain sometimes when I breathe in along with the muscle pain etc. I understand that the ER is there to diagnose illnesses and diseases on an emergency basis but it sure gets frustrating when the doctors runs into the room and says I've got good news...... everything checks out fine and you are good to go. And out the door I go with tears in my eyes feeling just as bad as when I went in.

Don't get me wrong. I am glad that I went to get checked out and am very, very grateful that nothing life threatening is wrong with me but I just want to know WHAT is wrong. I was able to push up my appointment with my primary care physician to Wednesday. I really hope that she will be able to figure out what it going on with this old body of mine. Yesterday there was a Santa parade in the neighborhood close to ours so I took my daughter to watch it. My chest, arms and legs ached so bad from the cold that I was almost in tears and had to sit in the car for most of it.

I know that I won't get the magical answer on Wednesday but I do hope and pray that I'll know something soon so I can feel better, stop crying and finally get a good night's sleep. Not asking for a miracle, just some relief.

I'm done venting.....for now

Shari, I'm glad you went in. Did they check out your heart?

An ER doctor once said to me that they don't do any diagnosing in the ER, they only manage symptoms. Well, how do you manage something when you don't know WHAT it is?!!

I still think that seeing a cardiologist to assess your situation is a good idea.

Symptoms don't happen for no reason. Something is causing them. Let's hope someone can figure it out soon so that you won't have to suffer much longer.

Annie

I don't think I can go on much longer. Each night is getting worse and worse to the point where I actually feel like I am going to die. I just feel so sick. My muscles ache and burn sooooo bad that it wakes me up at least 4-5 times a night in tears. It's starting to hurt to the bone now. My chest hurts like it has a serious cold in it with mucous but nothing is there. I just feel so bad that words cannot explain it. It feels like something is attacking my body and I am so afraid that they will not be able to find out what it is. I kept telling my husband a few months ago that something was different with this last MG exacerbation. Something else was going on besides the MG and it just keeps getting worse. I don't know what my doctor will be able find out because what I feel isn't something that is ordinary. I just feel so sick and can't really explain some of it.
I'm scared.

For those of you who believe in a Higher Being, please pray for me.

Shari, Call your primary doctor's office and get in. They always have emergency appts. available, you just have to "turn up the volume" and let them know how bad you are. I'm scared for you.

They should probably check any inflammatory markers, like rheumatoid factor, c-reactive protein (CRP) and erythrocyte sedimentation rate (ESR). Sometimes CRP and ESR can be elevated when the white blood cell count looks fine, in case you have an infection of some kind.

Did they do a D-Dimer at the hospital? Did you get a copy of everything they did? If not, they should fax it over to your doctor's office.

How long have you been on the Cellcept? You should always look to drugs with weird symptoms. IVIG too.

I wish I could do more to help. You may need a few doctors to help figure this out. Someone HAS TO help you right away. Do NOT wait until after Christmas!!! Will be sending thoughts your way.

Annie

Annie,
I called and am getting in to see my doctor today at 12:30.
They did a D-Dimer at the hospital which was somewhat elevated so that is why they did a cat scan of my chest and they also did a D-Doppler of my legs to check for clots. Everything came back normal.

I've been on Cellcept for 4 years now. I am on 1500 daily now as it was decreased a few months ago.

I am looking for the papers from the hospital which probably won't do me any good though because everything came back as normal except my lymphocytes which are low because of the cellcept I believe.

I am due for an IVIG but am still wanting to hold off because I just don't want to put anything else in my system right now. I hope that my MG won't get too bad without this IVIG. I am in such a quandry.

Something IS wrong and I just have no idea what it is. I am trying to be excited for christmas and not worry my kids but I am doing a terrible job at it because I have never felt so sick in my life. Not even when I was having trouble before I got diagnosed with MG. Never, ever thought I would say that because I didn't think it would be possible but it is.

Thanks for all of your input and help Annie. I really appreciate it even though it my not appear to be so from my depressing posts lately.

Shari

Again, get your cortisol checked!!! It usually has to be done in the morning, after fasting.

Also, Alice mentioned serum sickness to Erin a few posts back. Maybe you have that due to IVIG.

What was your blood pressure? Pulse? I bet they did a chem panel. If not, you have to get than done too.

Some doctors say that a slightly elevated d-dimer is no big deal, and it might not be. But it could also be a sign of inflammation. Did they do your Pro-time (shows blood clotting ability)?

Someone needs to really look at all your "systems" and see what the heck is going on.

I'm glad you are going in. And I didn't even notice any moodiness or bad mood due to depression - only that you REALLY need help.


Annie

Shari, What type of CT scan did they do for your lungs ? Was there a contrast dye injected in by IV ? I have a genetic blood clotting disease and have had a DVT and a PE and many of the symptoms you are describing sound like the PE I had. Its a deep ache that burns into your bone. Hard to explain. I am not a dr and don't want to alarm you but you should know. The hospital did my CT scan wrong - and the Lung Dr was absolutely livid after ... somehow I survived but ...take care... cos I have been told that I have to make a big fuss at the hospital if they ever try to do the wrong CT on me in ER like this again.

My next door neighbor's 20/21 year-old daughter died in January. She was taking Yaz for severe PMS -- started having what the docs thought was bronchitis -- Shari, that mucus "feeling" and chest pain is starting to ring a bell. This poor girl ended up dying from a PE -- collapsed in the shower at college -- her roommate, a nursing student, was unable to revive her.

Sometimes it IS a ZEBRA!!

Oh, how awful.... please accept my condolences.

There are law suits going on with this drug... check with Google.

Many young women have been affected with blood clots.

This is just totally tragic.

I'd like to mention that some antidepressants do have anti-cholinergic properties. These would be the TCAs ...or tricyclics or older ones.

But some SSRIs have been known to cause fainting and other orthostatic problems. So do be careful if you go on one. Start slowly with lower doses.

I wasn't able to read the latest posts before I went to the doctors. I am not sure what to think of what my doctor told me. She said that I have Fibromyalgia.... Fibromyalgia?????? She did some pushing in a few areas and I was tender. Mainly only tender on my arms but whatever.

Okay, I have been to see her about 10 times in the last 3 months for various issues I have going on and she has done a lot of blood tests. I forgot about asking her about doing the cortisol test though. She has done a hormone test, thyroid test, vitamin test and all the other normal blood tests(electrolytes, liver, kidney functions, white blood, red blood, etc). She told me today that there wasn't anything abnormal with any of these tests except that my Vitamin D was VERY low. I think she said that the normal range for vitamin D is 40 and mine is 10. I am taking 2000 i.u of vitamin D every day to raise this.

She prescribed a low dose of antidepressant (10 mg) to help me sleep and to also hopefully alleviate this muscle pain that I am having. She also wants me to go for water therapy. Not sure what to think of this but she has always been a very thorough doctor and one that I really trust. A lot of what she said made sense in regards to the muscle pain, the depression and my lack of sleep. She has been my pcp for about 12 years now but Fibromyalgia is something that never really crossed my mind and I am not sure what to think about it. She wants to see me in two weeks for follow up but if I need to see her earlier then she told me not to hesitate to call her.

I did read another thread on here about Fibromyalgia and MG. I'm still confused about this diagnosis