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bunnysammy (@bunnysammy)

Autoimmune diagnosing

Autoimmune Diseases | Last Active: Apr 28 2:55pm | Replies (117)

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@johnbishop

Hello @bunnysammy – Welcome to Mayo Connect. I’m happy you found us. Connect is a good place to share your health concerns, ask questions and read what other Connect members with similar health issues are doing for treatments. I’m sorry you haven’t been able to get any solid answers. I’m sure that can get you feeling like giving up. Don’t do it! Posting on Connect is a good start and hopefully someone can provide information that will help. Here is a story that may help you know you are not alone:

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with
myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

I'm also tagging a few members who have had difficulty getting a diagnosis. @lillone43, @heidisue, @kibwezi, @techi, @sacolucci can you offer any suggestions for @bunnysammy ?

One thing I can think of is to make a list of all your symptoms and questions and maybe a daily pain log rating your pain. Then take that with you to your doctors appointment and see if you can get some answers. It's so easy to forget to ask or tell the doctor your main questions during the appointment and the list can become your talking points.

John

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Replies to "Hello @bunnysammy – Welcome to Mayo Connect. I’m happy you found us. Connect is a good..."

Thanks John:) I'll check out that Ted talk.
I've been writing down a log of my symptoms for the past month. I didn't really think about it before. Logging the pain scale is a good idea. I have a tendency to down play pain so if I write it down when it's happening I'll be more honest.

@john l jusy want to ask you a question. My ammonia levels were up 3 time. The last time about 4day ago l went to my rheumatologist for a regular checkup, l was filling out the routine paperwork and just fell in the office and my mouth was bleeding. I texted my husband in was in the car to tell him what happened so my hematologist wanted me to come to the hospital which l don't like going to anymore. So everything came back normal at it usually does. So they wanted me admitted lwanted to go home but the said l need to see a neurologist. Now this is the one that said l have conversion disorder. I had an episode with falling, unable to get up and now vomiting again they say its stress and they saw l was having problems with walking again
Has this ever happened to you before?

Hi @techi – I wasn't sure if your post was for me or not. It looks like @john is no longer around since he has never posted if you look at his profile by clicking on his name. If your question was for me, I have never had what you had happen to me. Were they able to find out anything when you stayed overnight at the hospital? Did you see the neurologist?

John @johnbishop

Hi John and all, I'm not sure how to start a new post, so forgive me if this is incorrect. My questions are that I have some inflammation mostly in left hand, now have adhesive capsulitis following a yoga move. Actually, had become quite weak on top of body so this probably contributed to frozen shoulders. I've tried to treat naturally with herbs, etc., but inflammation in left hand and generalized discomfort following exercise kept me from doing too much. I walk. My CRP is usually 0.2 or less but my sed rate jumps around from between 25 to 60. Rheumatologist thinks I have seronegative arthritis (RA), but since none of my blood markers show it, I'm skeptical. I seem to have some connective tissue issues though, I believe as stretching too much can cause pain for several days. Rheum put me on methotrexate 7 months ago. It may help some but don't notice really much improvement. Now he wants to add Embrel and Prolia (because I have osteoporosis, -3.4 in spine at one point; hips -2.5 or so, too). I'm scared to death of both drugs. Any recommendations on drugs, side effects, what to do, reasonable to resist drugs?

Hi @ann2 – To start a new discussion in the same Group (in this case Autoimmune), just go to the top and click Autoimmune next to Group. This will take you to the Group Autoimmune where you can click the Start A Discussion button and type your new discussion post.

As patients it would be better to have a discussion with your doctor about the side effects and risks of the new drugs vs the risk of your condition getting worse. I'm with you on not liking some of the new drugs especially after watching a TV commercial and the negatives they list off in the last 20 seconds or so of the commercial.

John

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