Originally Posted by nemsmom

Thank you so much Erin. I'm having a hard time waiting for my biopsy results right now. I have this test that's supposed to show what's wrong with me and I have to wait for the results.

My weakness is getting worse. Now instead of just having spells, I'm just weaker in general. If I get up and try to fix a meal I need a nap. Ugh I hate this, I needed to hear that once I have an answer it will get better.

Any time I get up and walk or do anything I feel like my neck muscles are weak and I need to rest my head. Since yesterday if I turn my head to one side or the other, tilt my head down or lie on my side it feels like my throat sticks closed.

I see my primary doctor on Friday to have the knots cut on my stitches and I will tell him about that then to make sure he doesn't want to look into it further.

Since the beginning of the month I have been feeling like it takes more work to breath. I told the doctor that did the biopsy and he wasn't concerned. I know he heard me but he didn't even respond to it. I'm scared and I just don't know what to do. At night when I'm the most worn out I try to relax and go to sleep and notice that there have been several times where if I'm not concentrating on breathing I feel like I almost stop. I don't feel out of breath, I feel like I have to work hard to take a normal breath, not breathing any deeper or faster just working harder. Does that make sense?

I just can't afford to keep going to doctors and having tests and racking up the bills. If this test doesn't show a result I don't think I can even try to look for the answer anymore. I will just have to deal with whatever is wrong with me and go on with life. I feel like a whiner, most people aren't at the doctor one quarter of the amount of time that I am. I'm so sick of being looked at like it's all in my head, these doctors are starting to make me think that maybe it is. Maybe there isn't anything wrong with me as far as a muscle problem and it is anxiety.

I don't really feel like it's anxiety, I honestly believe that there is some kind of muscle disease here. I just don't know where else to turn. I feel like I've exhausted my resources and there's no where else to go.

Okay sorry to have ranted, especially when you are doing so well. That is so great that you are feeling so wonderful. Sorry again for the venting and ranting I needed to get that out.

I hope your IV IG goes well along with the step down on steroids. I hate steroids, I've had two different treatments of IV steroids (for three days each) followed by a two week tapper on Prednison but they think I'm allergic to steroids now so no more of that for MS flares anymore. I would hate to be on that high of a dose of steroids all the time, hopefully the step down will start helping with the swelling for you. Anyway, congrats on the good day, can't wait to hear how the IV IG goes and how you do on the lower dose of steroids.

Kristie

Originally Posted by erinhermes

Honey, it is not in your head! It really isn't! I know what it is like to be afraid to fall asleep - not knowing if I would wake up. I know what it is like to have dr's tell me I'm "fine" when I knew I wasn't.

MY own FAMILY thought I just wanted attention or that b/c I smoked I deserved this. No one deserves MG. No one!

When I was finally diagnosed, I was depressed for quite a while and scared all the time. After my first plasma exchange I screamed @ my hubby for 3 days straight ( I was kind of tricked into going my Mike and my onc). After that, I started on Paxil and stated to feel less afraid. I kept my cell phone by me all the time and wouldn't leave my home without my meds.

MG is a tricky disease and unfotunately MOST docs have lost their humanity. If we were MEN complaining of these problems, I think we would be taken more seriously........

The breathing is a serious thing. I am stunned that your idiot doc didn't cae enough to do anything........most are a joke! I saw "specialist" after "specialist" to try and find out why I always sounded drunk, wobbled while I walked and had problems swallowing.....they all said it was TMJ (which I do have) and bad sinuses (which I also have).......

There has got to be some way to get your proper diagnosis. You can't give up!

My head and neck also gave me problems - sometimes I just could not lift it. Breathing was also a major issue. I thought I was crazy. Turns out, I was just really, really sick..........

It sounds like you really need another doctor. You need MEDICAL help. You need someone to LISTEN to you! You live in the DFW area, right? My neuro is here on SA.......he really is the best. If you come down and stay in SA, you are welcome to stay @ my house. We always have room for more!

Once you get your proper diagnosis, you will feel so much better! And you are not a whiner! It is scary when things that we once took for granted are now taken away from us and we have no idea why.........

My neuro's number is 210-949-1913. His name is Badreldin Ibrahim - and he listens! WOW! I gave him my list o' symptoms and he diagnosed me within 5 minutes!

Hang in there! Don't give up! This is NOT in your head! It isn't! You are weak b/c you are sick...............not mental

Let me know if you want to come down and stay with us.......We have 5 dogs and 2 cats and 3 kids - needless to say it is never dull here! But once Dr I gives you your diagnosis, you can find a great neuro in your area and get the meds you need!

Erin

Originally Posted by Gdbyrd

A year ago today I was told I either had MS or a brain tumor that looked cancerous, lol.

It's awesome you're doctors are finally on the right track and you're starting to get better! Gonna be a good year :P

Redtail, lol.

Originally Posted by redtail

Hi Erin,

Its great isn't it to be able to look back on how bad we were and how far we have come!!

I think back to just how bad I was when something happens, like my lips not working last week, when I tried to eat some yoghurt. I had to giggle, because its been so long since my lips didn't work I forgot how amusing it can be, you think you've succeeded in eating something, but its still on your spoon, or worse on your lap!!! Yep its good to look back...
and realise just how far I've come.

Originally Posted by nemsmom

I think the waiting is just getting to me. The doctor I normally see is so compassionate, I have a hard time understanding her, but she is great. She is not the doctor I saw for the biopsy though, I saw her boss.

Just a couple more weeks and I'll know the results. I think this test will say what is wrong with me, I just don't want to get my hopes up to be disappointed again.

Oh and I was wondering, when you have breathing problems, do you ever get a pressure pain in your head?

My primary doctor also cares, he knows it's something he just doesn't know what. That's why he has sent me to specialists.

I don't think we could really afford to keep looking for an answer if we don't get it now. The medical debt is tremendous already. That and I really don't want to go through any more tests. If a doctor is going to diagnose me they are going to do it with the tests that have already been done.

I want to thank you all again for being here. It helps so much to have someone who understands. My husband is so supportive and he tries so hard but I can tell he is scared too (poor guy has already watched me go through three near death experiences) and I know more about this than he does.

Okay I can't think right now, thanks again.

Kristie