I am still waiting to hear from neuro about blood work that was sent out two weeks ago yesterday. I called their office yesterday but just got voicemail. I had two bad days, Monday and Tuesday. Yesterday it hurt to breath too deep. I kinda got scared but it relaxed after a while. When I go to doctors, they listen to me breath and everything sounds fine, but it hurts sometimes to breath. Feels like something is stuck in chest. I've been to a pulmonologist before (2 years ago) and was diagnosed with mild COPD, but he didn't take me too seriously but sent me to pulmonary rehab. Because I have days where everything is fine and my breathing isn't labored at all, he though it was all in my head. He said that if they look deep enough they can find something wrong with anyone. Obviously he didn't look deep enough for me because I was finally diagnosed by my GP with B12 defieciency so bad that I could have died. My levels were at 89 where they should have been well over 500 by my neuro's standards. They are now over 2000 with weekly B12 shots.

Anyway, thanks for the vent. I am getting so tired of waiting for help. My therapist sure doesn't think this is all in my head. I've also been put on anti-depressants that did nothing to help. The only time I get depressed is when my health prevents me from doing what I want to do!!!

Jackie

Hope you get some results back soooon!! Breathing problems can be the pits, I know from my own experience. My breathing problems manifest as a feeling of weight on my chest, from the fatigue in the breathing muscles. But no pain, other than the slight aching I always get in fatigued muscles.
Hugs,

Neuro office called and my blood work all came back normal. Asked nurse where we go from here. Told her about breathing problems being intensified the last few days and she said she'd make a note for neurologist and call me back. Just called back and said he wants me to get in with GP asap to make sure it isn't heart related...or maybe get me back in to pulmonologist again. I've been that route before and nothing showed up with cardiologist and pulmon. thought I was depressed, so here we go again. I just want to cry. I'm depressed now!!!

I did find a mg board in Birmingham and e-mailed them for referal to mg specialist and I got the name of a Dr. Oh that has an mg clinic at the Kirklin Clinic there. I think I might try to get in to see him. My daughter lives in Birmingham and I could stay with her for the night to make the trip easier.

Well, guess I'll give my GP a call in the morning and start the song and dance all over again.

Jackie

Dr. Oh and his staff are wonderful and his associate Angela Young diagnosed me with MG after everything had been normal. This came from a single fiber emg. Dr Oh mainly oversees the emg clinic but his associates are wonderful. What a relief to get a diagnosis and learn to deal with it and know it is not in my head. I also went thru the cardiologist and pulmonology thing too. Good Luck!! You may email me if you like for more info.

Hi Jackie.
I know how hard is to have your life suddenly turned to illness, depression and all medical issues.
But I would like to share with you something I heard from my MD about all this. He said: you can cry, and you must cry, you can be sad because it`s sad to loss your "normal life", but you should not complain about going to receive some help from all people related to your treatment. I started to change my view after this. It`s still very hard for me to accept that I`m not swimming or working or walking in a forest trail... But now I'm trying to see what I can do and everything I receive from others. To find this place was a very good thing in my life.
I realy hope you find soon what is happening to you.
Hugs

Just wondering Jackieinbama if you had gotten an appointment in Birmingham?

I've not gotten an appt. in B'ham yet. Currently, my local neuro basically won't see me anymore until I have heart and pulmonary problems ruled out. I have been scheduled for a heart catherization on Friday the 22nd. My cardiologist doesn't think they will find anything, but that is the only way she can rule out heart problems for sure. I am not looking forward to this at all. Has anyone here ever had one?

Also, another delay in scheduling a trip to B'ham is that we are in the process of moving. Luckily I have had 4 good days this week, but I feel a bad spell on the horizon. I can feel it coming on. Do any of you feel symptoms coming on before you actually have an "episode"? What I call an "episode" is when my chest gets tight, I loose my voice, I get muscle aches and weakness and am very fatigued. Also, my head fills full and sort of foggy.

My GP said that since the bloodwork that my neuro sent out to Mayo all came back normal, it is very unlikely that I have MG as the tests now days are very sensitive, but from reading on these posts, I'm not sure that is true. He also said he had only seen 2 true MG cases in his 15 years of practice.

Anyway, will wait until after heart catheter before I try to move forward. Hope I don't have to see pulmonologist as a couple of years ago he made me feel as though I was not worth his time since I didn't need oxygen to live.

I'll keep you posted on what I hear. Thanks for asking. I've been reading all the posts, but didn't have anything to report so didn't post myself.

Jackie

Jackieinbama, I have had a heart cath and it was very simple. I had it done in the same hospital where I worked as a nurse and went home in 1 hour. In answer to your other question, I know exactly what kind of day I'm going to have when I first get out of bed in the mornings. I have 3 or 4 bad days and then have 1 or 2 good days.I am learning to live with this and work around it now rather then dwelling on ("why").