Hi All.....

[all4family]

Just wanted to say hi and let everyone know I'm still out here. I've been through quite a rough patch lately, but hope I am pulling out of it. Sorry I didn't check in earlier. I get downhearted and tend to withdrawl when I am so sick. (never mind the fact I just don't have the energy to think let alone type!) But I know you all know how that goes!! I did go to my local doctor. He is a D.O. My whole goal was to get in and get out while appearing to be just fine! In truth I am better then I was years ago, but I sure wish that meant I was "better"! I really liked him. He was super nice, and not pushy. He said he watches the shows on tv where people go on for years without diagnoses!!! Then he said I will see you on there soon! He asked if he could keep my paper work from mayo clinic, and said he wanted to look into all the information on them. I wish I had found this doctor sooner in my illness. Maybe I wouldn't have gone on for so long with so many problems. Well that is all. I am still not doing my best, and am having a lot of visual trouble, and the rest of the general junk, so I have barely turned on my computer, but really do want to catch up with everyone here. I hope you all are doing well, and all of you are in my thoughts and prayers every night weather I am on here or not. I am feeling a bit better, so I will try and catch up with you all tonight a little! Take care.

Hugs

Suzy

and to all the new folks I am sure have come around lately Hi, and I look forward to getting to know you!

[potsgirl]

Hi Suzy,

It's so nice to see you back. I've missed you! I'm sorry you've been going through such a tough time, but your DO seems like a wonderful find. It's funny you brought up 'Mystery Diagnosis' because my neuro has made the same comment to me a couple of times. Did you happen to see the show about POTS? Not great, but pretty good. What's going on with your vision? Again, welcome back to the Forum!

Cheers,

Jana

[arizona girl]

Just wanted to say hi and let everyone know I'm still out here. I've been through quite a rough patch lately, but hope I am pulling out of it. Sorry I didn't check in earlier. I get downhearted and tend to withdrawl when I am so sick. (never mind the fact I just don't have the energy to think let alone type!) But I know you all know how that goes!! I did go to my local doctor. He is a D.O. My whole goal was to get in and get out while appearing to be just fine! In truth I am better then I was years ago, but I sure wish that meant I was "better"! I really liked him. He was super nice, and not pushy. He said he watches the shows on tv where people go on for years without diagnoses!!! Then he said I will see you on there soon! He asked if he could keep my paper work from mayo clinic, and said he wanted to look into all the information on them. I wish I had found this doctor sooner in my illness. Maybe I wouldn't have gone on for so long with so many problems. Well that is all. I am still not doing my best, and am having a lot of visual trouble, and the rest of the general junk, so I have barely turned on my computer, but really do want to catch up with everyone here. I hope you all are doing well, and all of you are in my thoughts and prayers every night weather I am on here or not. I am feeling a bit better, so I will try and catch up with you all tonight a little! Take care.

Hugs

Suzy

and to all the new folks I am sure have come around lately Hi, and I look forward to getting to know you!

Oh suzy, I'm so glad you found a doctor that can hear and see you for the truth you really are. I so understand the frustration and the fear. I had to fire both my primary care and gastro doc in the last few weeks because of their failure to provide me care even when my white blood count was elevated and and I had a history of colon rupture. I don't know why I kept hoping they would take me seriously.

Ironically the week before the reinfection my cardiologist had suggest I switch primary care docs to one she works well with. So when I was refused care and told to go to urgent care. I called the doc she had given me, they saw me within an hour and got me on antibiotics right away. They also gave me a name of a new gastro doc. I can't believe the difference in the quality of care and throughness and the fantastic follow-up on my lab results. God has finally led me to a good team of doctors.

I know he is leading you there too! Sorry you've been feeling so poorly. Have your new doc take a look at my neuro's website at Phoenix Neurological associates. They provide a lot of info on our conditions and they offer treatment. I saw Dr. Grubb on Monday and he confirmed the neuro's diagnosis of auto immune autonomic neuropathy and said that the IVIG treatment can be helpful, so if my insurance approves. I will probably try it. This same help is within your reach. You deserve to get better too!

[janiedelite]

Hi Suzy,

It's great to hear from you again. I'm glad you have a doc who wants to try to help you. I wish you all success!!!

[Mrs. Burschman]

Hi! I've been gone for a long time, so we've never met. Thanks for the introduction!

Amy (Mrs. Burschman)

[Broken_Shell]

Well Suzy, at least you made me smile! We must have been typing our "checking in" messages at the same time. You are in my prayers, and I am glad to hear that you are feeling at least a little bit better. It's a good sign that you were able to make it out to the doctor's appointment... I just cancelled my physical therapy for the day because I am just way too sick to leave the house. Hang in there though... I hope your battle gets easier everyday until things stabalize! Big hugs

~ Michelle

[all4family]

Hi Jana, I love doctors who will watch those shows. It means there minds are open for things that are out of the ordianry. Yes I did see the show on POTS. She was diagnosed with orthostatic Intolerance on the one I watched, was it the same? It was good, but I didn't feel it portraid the disease for what it was. To me they made it seem like she just had to take a pill, and then she was fine after that. But at least it gets the name out there. Maybe for some of those open minded doctors who are watching! I've missed you too.

AZgirl, sorry you had to fire a couple of doctors, but glad it worked out good for you. The IVIG therapy is the therapy the neurologist said we could try on me if I don't improve. When are you going to start it? Let me know how it works for you. God sure can make things work for the best when we just give him the room. So many times I try my way, and it just doesn't work,but I back off, and he has a better way in store for me already.

Hi Thankful, Thank you, and it's good to talk to all of you again also. Hope things have been goodfor you. It will take me a while of reading to catch up on everyone.

Hi Amy, I hope the reason you have been gone for a while is that you were doing well. I look forward to getting to know you.

Hi Michelle, That is so funny. I have noticed we seem to be going through these rough times at the same time! I am sorry you couldn't make it to your physical therapy. You know the whole neck thing with me is really connected here. My neck started to crack and crack, then I got worse, but feel like it is getting better due to my neck. Almost like it is trying to get aligned right, and it has to heal in between. The DO doctor I seen is a specialist with some cranial spinal thing where he manipulates the bones and such. I didn't ask about it yet, but am interested. But what I read was you get worse for while before you get better. I hope your battle gets better soon also. It would be nice to be off the battle field for a while wouldn't it?

Thank you all, and take care

Suzy