Jump to content

Out Of The Hospital For The Sixth Time Since March:


LindaJoy
 Share

Recommended Posts

Hi, everyone. It's been awhile.

I 've been out of the hospital for a week and getting worse. I can barely stand now. My heart is a mess, with its irregular beats, or tachycardia, or just plain pain. My stomach kills me from time to time, and I have diarrhea all the time. My muscles ache, and on and on. I've lost a lot of weight (I'm down to 108, when I normally weigh 125). Anyway, I've been referred to the Mayo Clinic in Mass. Can anyone tell me anything about it? It's about a 12 hour drive for us, I think. I don't know how I'll make it there, as I can barely travel the fifteen minutes it takes to get to my doctor's office, but we have to try.

I'm being referred by my gastrointerologist, who hopes to get me in next week. Is this a fantasy for him? I thought the waiting list at Mayo would be quite lengthy.

I'm also concered that my gastro. is referring to the gastro. department up there, and maybe that's not the problem. I am having a lot of stomach pain (I have ulcers), my gastritis is terrible, etc., but I think, as do some of my other doctors, that my GI problems have an underlying cause that is not gastro. Will the docs there send me straight away to one of their colleagues if they suspect this is the case? I would hate to have to make that drive twice, if I'm sent home, only to wait for another appointment.

I'm currently being tested for Churg-Strauss Syndrome. Docs have ruled out mastocytosis. I do have an immunologis Univ. of Mich, Ann Arbor, looking at my bone biopsy slides and medical tests from my last two weeks in the hospital here, and he has ruled out mastocytosis and doesn't believe in any other form of mast cell disorder. He said that if it's not mastocytosis, then it's not mast cell. I've read so much about mast cell disorders, the ones different from the diseases (mastocytosis). Anyone an opinion on this?

Thanks, everyone. It's been a long haul for all of us. My husband, who has been so supportive, is on his last supportive leg. We've had to move into my mother's house, as it's closer to the hospital, which hasn't gone over very well, and my son and mother are having to help out with me now, as well. I'm worn out like you would not believe.

Hope you all are doing well.

LindaJoy

Link to comment
Share on other sites

Have you been checked for Gluten Intolerance/Celiac Sprue? Just curious since it is often underdiagnosed unless your gastro is really up on it. Dr. Grubb was telling me that it is petty common to have an autoimmune disorder in the gut (Chron's, ulcerativ colitis, etc..) as a trigger in POTS. I had a positive biopsy for gluten intolerance at the same time my POTS sysmptoms started. He said he wasn't surprised by this at all since one autoimune disorder often sets off another (he explaining ANS damage can be caused by an autoimmune attack on the nervous system).

Link to comment
Share on other sites

hi, linda,

i have nothing to share except my heartfelt sympathy for your travel situation and my sincerest hopes that you find answers and relief from that pain very soon!!

i wish you support and strength for your continued journey, and am so glad you have a supportive spouse :rolleyes: i know i'd be l-o-s-t without mine; goodness, what he's put up with and helped me through!! may you both be blessed.

thank you for letting us know how things are going with you :P

peace,

lulu

Link to comment
Share on other sites

Linda, I hope that they find answers that will help you to improve. You certainly have been through a great deal. Hugs to you, Nina

Link to comment
Share on other sites

Hi,

Wanted to wish you the best of luck at your appointment....Where is the Mayo clinic in Mass??? I live 30 min. from Boston..

Link to comment
Share on other sites

First of all, I'm so sorry. You have been through alot recently. I wish the best things for you and hope that you will begin to find some things easier. Heaven knows, it has to get easier sometime right? :)

Are you sure its not Minnesota? If it is the one in Rochester, there is an airport right in Rochester. If this is the one, maybe it would be better for your health to fly. (although now.. with all the complications...I can't imagine the airports have gotten pots-friendlier!!)

The two times that I've been to Mayo, it is a bit of a scramble. Your main MD or your intake MD will give you a referral to GI (for example) and they will make the appt for you. They will give you the next up, but sometimes it is a week or two away. Alot of people plan on camping out in a hotel near Mayo for at least a week and several if you can afford it. Most Hotels central to Mayo have complimentary shuttles. If you are poor, like me, when you get the appt two weeks away, you can scramble. You do this by going to the GI wing and let reception know that you need an appt sooner. Sometimes, when they have cancellations, they will take whomever is waiting in the waiting room. I sat in the waiting room for 3 days to get my appt. Don't let this scare you, Mayo clinics have "quiet rooms" with recliners and dimmed lighting. You can be there and have a family member sit in the waiting room to hold your place. Mayo knows that most of their patients are miserable and they will work with you.

I highly recommend Mayo. If you can manage it, it is an incredible place to go. Good luck to you. It sounds like you are ready for what Mayo can offer.

Link to comment
Share on other sites

Guest Anne L

LindaJoy,

I'm sorry you're having so many problems. I hope your test results give you answers that you can find treatment for.

You didn't mention if you have MVP. Without Tenormin (beta blocker) I have supraventricular and ventricular tachycardia. VT with severe chest pain (elephant doing pushups on your sternum) and occasional loss of consciousness.

My heart rate also drops to low 30's with vigorous (for me) exercise and also with lidocaine and other 'caines injections or eye drops. I don't know if this is related to MVP or another facet of dysautonomia like gastroparesis, NH, etc.

You're and your supporters are in my prayers.

Anne

LindaJoy,

I'm sorry you're having so many problems. I hope your test results give you answers that you can find treatment for.

You didn't mention if you have MVP. Without Tenormin (beta blocker) I have supraventricular and ventricular tachycardia. VT with severe chest pain (elephant doing pushups on my sternum) and occasional loss of consciousness.

My heart rate also drops to low 30's with vigorous (for me) exercise and also with lidocaine and other 'caines injections or eye drops. I don't know if this is related to MVP or another facet of dysautonomia like gastroparesis, NH, etc.

You're and your supporters are in my prayers.

Anne

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...