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ManiS

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Joined
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Undiagnosed
Diagnosis
00/0000
Country
US
State
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Hello! I can't tell begin to tell you how happy I was to find this forum tonight. For quite some time now, I've been struggling with a wide (and seemingly disconnected and bizarre) set of symptoms that have baffled my doctor. Luckily, he may have been baffled, but he is not dismissive. I give him huge credit for being ready and willing to refer out to each and every type of specialist who might provide us with another missing puzzle piece.

After doing extensive research on my own, I started to feel more and more certain that I probably have fibromyalgia. When I talked to my PCP about this a couple of weeks ago, he agreed, and said that he's been keeping it in his back pocket, because he needs to rule out potential diseases and disorders that could be life threatening.

I have an appointment scheduled with a practice that specializes in fibromyalgia and other chronic conditions this Tuesday. I was told to expect to be there for about two hours. Would anyone be willing to walk me through what I should expect at this appointment?

Thanks so much for your time. I look forward to getting to know as many of you as possible!

Mani
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
PA
Hello and welcome. I am sorry I did not see your post sooner, but I do hope your first appointment with the doctor went well. Please consider coming back and letting us know how things went and if you were happy with the doctor. I hope you will join in around the forum and ask questions and feel free to answer other members posts.

We try to be supportive and offer coping skills so you can help yourself by personal management. See you around the forum. :)
 

ManiS

New member
Joined
Nov 23, 2014
Messages
4
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
MA
Hi 1sweed, no worries about not getting back to me sooner! Now it is my turn to apologize for taking so long to get back to you! Things got crazy with preparations for Thanksgiving here, and we are just now getting a chance to catch our breath.

This whole process has been a crazy-quilt of trying to patch together information from various specialists and my own research. At times it has been frustrating and felt like each answer has led to twenty more questions, but after this past week's appointment and the research I have done since then, I think I'm finally getting somewhere. It's looking very, very likely that I have histamine intolerance/mastocytosis, which can actually explain every single symptom I've had, including the classic fibromyalgia pain.

Before all of this started, never in my life did I think I'd be excited to find out that I have a chronic medical condition, but the not knowing has been so terrible. Now, a diagnosis and some next steps for learning to manage that diagnosis feels like it will be a sweet relief.

Best,

Mani
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
PA
I am sure getting a diagnosis, any diagnosis, would ease your mind. I remember having that relief years ago, knowing finally I was not crazy or just depressed but I really did have a condition causing my symptoms. I am very happy for you. Even with that diagnosis your welcome to come again and join in talking with us folks. I am sure you have some coping skills of your own to share.

Happy to hear you made it through thanksgiving and now can relax a bit. Hope to talk with you more later. :)
 
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