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Go to a fibro doctor. A specialist. I can recommend the Fibro and Fatigue Centers: http://www.fibroandfatigue.com/
I've had tremendous help from the one in King of Prussia, PA. The doctors really understand what you're going through. There's one in Detriot too. I travel 2.5 hours each way to visit mine (Mel goes there too). That should tell you how good they are for me to bother to go that far...! 
I hope you can get someone to listen to you who's seen this thing before. Try calling them on the phone and asking some questions. They were really nice with me over the phone. Like no doctor I've ever been to before.
They accept insurence for all the lab tests, and if you've had bloodwork done in the last 3 months they don't repeat unnecessary tests. Their info in Detroit is:
Fibromyalgia & Fatigue Center of Detroit
5877 Livernois, Suite 105
Troy, Michigan 48098
Toll-free: 1-866-443-4276
Phone: 248-813-8900
Fax: 248-813-8979
~nelly~
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Your hands and feet look like my Mom's.... as we talked about before she has Lupus and CTD.
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www.facebook.com/shell.marr
www.myspace.com/shellmarr
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Nice pedicure. Love that color. I so need a pedicure. I've been slapping on the polish myself because I'm afraid to go to a nail salon. Concerned about picking up some gross infection.
Wow your symptoms supercede mine and I thought I was the queen of weird unexplained symptoms. Actually my friend Bonnie who has diagnosed lupus has some strange variation and the docs don't know what to do with her. So even if one gets a diagnosis there is no guarantee of a solution. I find that things change. In 1997 I had weird rheumitoid type symptoms. I had a positive lupus test (isn't that the ANA - don't remember) but with low titers. High sed rate and c reactive protein. I was in the most excruciating pain. I would lie on ice packs. Sitting was even hard. Finally one doc diagnosed me with polymyalgia rheumatica. Now, who has ever heard of that!
It lasted about 1 1/2 years. Now I have some residual aches more like fibromyalgia or myofascial pain. And I don't think my ANA shows lupus anymore. I did notice on my hospital labs that my sed rate is up (67). My bad IBS flares seem to be associated with my thyroid going low. And even once it is back where it should be it takes the body awhile to get out of the flare its in.
I think the docs are just as frustrated as we are. At least the good ones. Some just harden and blame the patient and find something to pin the blame on - like anxiety or depression or bad habits or drugs somebody else is prescribing. What I would appreciate is to be listened to, believed, and treated kindly. What a difference that would make.
You probably shouldn't try a new anti-depressant now while you are tapering off the steroids. My P doc says one change at a time. I get to where I want to quit everything or try a whole new bunch of things.
I couldn't get my colon pics up. Hubby will try to do that this pm. I think I can email them though.
Just look at all the knowledge you are gaining about guts and joints. Maybe you should start a consulting business.
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Michelle,
after reading your posts, symptoms and seeing your pictures have you considered Multiple Chemical Sensitivity (MCS)?. My aunt who lives in Lake Orion, Michigan has been house-ridden for years with severe MCS. She hasn't had any children, she never mentioned fertility problems specifically but I believe it was due to the fact that she couldn't get off steriods long enough to carry a child. I know she has or is taking Prednisone, Steroids, Vicodin and Ambrotose. My grandparents and my aunt are strong supporters of Ambrotose and Mannatech products.
It is just another suggestion to add to your list. I feel bad even suggesting something else. But I like everyone think there has to be some answer and that you definitely are not crazy.
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Microscopic Colitis, IBS-A, GERD, Hiatal Hernia
Bethany, Ontario, Canada
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I have no idea if a CT scan would show the gallstones ... I guess you can put it on your list to ask the doctor.
I've never heard of the C reactive protein test, but can it be normal even if you do have lots of inflammation? I know there are lots of lab tests out there that can be normal/negative even if you really do have the condition. Is your sed rate elevated? Mine wasn't, so I think that's why at first the rheumy blew me off and didn't think my positive ANA meant anything -- he said that if there were anything wrong I'd have an elevated sed rate and a positive RA factor. I notice once he got the extended bloodwork back and I had a positive ANA again plus the positive Sjogren's antibodies that he said nothing about the sed rate/RA. 
If you do decide to go to Mayo, let me know and I can give you some tips! If you normally get a decent tax refund each year maybe you can use that to defray the trip expenses??
Oh, one other thing ... you mention problems with sleeping. Have you ever had a sleep study? Maybe they'd see something that would give them more clues. (I just had one done, but I think for me it was overkill -- the rheumy probably knew that the sleep study doctor needed more patients to finance his Christmas vacation in Tahiti.)
I'm so sorry your hands hurt so much -- if they're just as bad tomorrow, then take care of them, and don't respond to this post. 
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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You know, I've never heard of MCS. I will google it here in a minute. Is it something that you can develop as I was relatively fine 2-3 years ago.
I've heard great things about the mannotech products. Wills cousin actually reps it or sells it or something. I figured what the heck, it can't hurt anything.
Steroids are a class c for pregnancy. However, the latest reproductive endocrinologist I saw said even if the RA or whatever IT is under control, I would be on a low dose, probably 5mg a day, as it can help the baby fight off your bodys immune system. Its theory that people with autoimmune issues attack the growing fetus and the steroids should help with that, just as they help people who have an organ transplants. At this point, there will be no baby making anytime in the near future. I figure at least a year before Will would even discuss the idea with me. At this point, he isn't willing to even try again because he says he can't see me go though the pain of losing another one. Its a mute point right now because I'm so sick anyways but my clock is ticking, LOUDLY. For now, I'm happy with my "boys" Oliver and Harley who have been at the beauty salon all day!!! I swear I spend more on there grooming than my own! HEHE
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Taking it one day at a time.....
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Re: Susie2
#283190 - 09/20/06 11:13 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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I treat myself to a pedicure 2-3 times a year as I wear open toe shoes at work. I've never picked up crude there but it does happen. Ask around, if a place has crude, most people will hear about it!! I just can't bend over and do them myself anymore. I can do a quick nail polish change if I have to but thats about all I can handle.
Yeah, the more I think about it, the more I think I should wait on switching AD's at the moment. Like you said, one thing at a time. If I change too much, how will I know whats making things better or worse.
Boy, your sed rate is still pretty high. Mine is down to the 30's on a good day, with the steroids. Yes, the ANA is the Lupus test. Mine has always been negative and I've never had the classic rash that most people get.
I have heard of the polymyalgia rheumatica actually! Did you ever test positive for a RA antibody with that?? I thought the Humira injections were really helping me but maybe its just the steroids. I went back up to the 7.5 today, my hands are toast. Could barely brush my teeth this morning.
My rheumy doc is usually nice. Only had one phone call with her that wasn't kind but otherwise, she does listen and is trying. I agree, I think she is as frustrated as me. I don't see here again until the last week in October so I guess I'll just stick with what I'm doing. May try to decrease the steroids again next week but do it in smaller steps. I obviously can't handle going from 7.5 down to 5. I've got some 1mg pills now, so I'll try 7mg for a week, than 6 for a week and so on and see what happens.
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Taking it one day at a time.....
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Re: ShellMar
#283193 - 09/20/06 11:18 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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I hope your mom is doing well with her treatment. I think they have ruled out Lupus because of the lack of skin rash and negative ANA but I think the CTD is still an option. Do you know what meds your mom is on and do they help her? Does she have problems with her eyes, like redness and pain?
On a personal side note, I remember you said your gyn reminded you of your clock ticking....have you ever been checked for Lupus? Auto-immune diseases can be hereditary. It is one of the top reasons why girls have fertility issues and miscarriages. I would hate for you or anyone else to suffer through the things I did when I was trying to have a baby.
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Taking it one day at a time.....
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Wow, thats actually VERY close, I bet only 10-15 minutes from my house!!!!
Ok, so I just called them. They will do an initial appt for one hour with a doctor for $360.00 which I would have to pay for up front and try to get reimbursed from my insurance company. If they would bill the insurance directly, I'd go next week but we are strapped for cash and I need some car repairs. They said the lab work can be done at a local lab and billed but I forgot to ask them about the treatments. I assume though that I'd have to pay for that out of pocket as well. I wonder why they don't bill insurance????
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Taking it one day at a time.....
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Let me know your thoughts when you google it. My aunt was a registered nurse for many years. At one point in time she worked and shopped and enjoyed her life. From what I understand of MCS it is progressive in that the more exposure you get the worse your symptoms and body degenerates.
Thanks for the info on steroids. I am sure there were other reasons for her decision besides just the medication. She also has fur babies, 2 shih-tzu's that keep her company all day.
Another thing you might want to think of is where you have been and what you have been exposed to on your worst days. Say for instance your trip to the hospital where your chest was tight and you couldn't breathe properly. What did you do that day that could have lead up to that?
I am not that knowledgeable on MCS, but I try to look up and understand as much as I can. I look at it the same way as IBS. That nobody really understands my aunt and what she endures. For many years, everyone (family included) just thought she was a hypochondriac and willed herself to be worse. I can see now though that the problems are real, yes depression may hinder the process of getting better but they are there.
Hope you are having an okay day and take care,
Bethany
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Microscopic Colitis, IBS-A, GERD, Hiatal Hernia
Bethany, Ontario, Canada
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