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outofadream

Desperate to help a friend

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Hey all, I have a friend who’s been struggling terribly with a huge decline in health over the past few months, and I’m trying desperately to help her find more answers, or at the very least more support. To be clear, I don’t have any reason to suspect she has dysautonomia (which is why I’m posting here instead), but I know so many of us went through those long struggles with being undiagnosed and struggling to get a doctor to listen, and that’s where she’s at right now. She’s been passed around between a huge number of doctors, and feels like no one is doing anything or putting together the whole picture. Knowing how many of you went through that or are going through that…was there ANYTHING that helped that process?

She gave me permission to share that for her, everything seemed to start soon after she began steroid shots for  back pain. She started getting a lot of stubborn infections (which makes sense, given how steroids affect the immune system), but it then branched out into a ton of undiagnosed mouth sores/swellings/lumps etc and an increasing number of systemic symptoms (extreme fatigue, nausea, aching, chills, that kind of thing). So far, no one seems to have any idea how all those symptoms hang together or what’s going on there, and she’s pretty scared.  I am not looking for a diagnosis or medical advice but rather how to navigate through the medical community in a case such as hers. 

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@outofadream - I am sorry to hear that your friend is going through such a tough time. I can relate, probably many on this forum can.  Dealing with a complicated medical condition is very frustrating, for both patient and doctors. Add to the mix the fact that we are unwell and it can get ugly. In my case, when I became ill with dysautonomia and started to faint, take seizures, racing heart with high BP etc out of the blue - I had no clue what was wrong with me, and neither did my PCP. But both of us worked together, I did my own research and he ordered the appropriate tests and eventually ( although having went through several ignorant and uninformed cardiologists ) I was referred ( per my request ) to an autonomic specialist who was able to diagnose and treat me. Thankfully I have my PCP by my side who has faught with me for 10 years now. It is essential that your friend has at least one physician that is her home base, that keeps track of all of her tests and results as well as coordinates her care. For most people that is the role of the PCP but to some it can be a specialist. 

My M-I-L has many health problems and sees 7 specialists in different fields. Her husband keeps all of her records, goes to all of her appointments and informs himself about all of her diagnosis. Recently they had to switch PCP's and this came in very handy. Does she have a friend or family member that is willing to do this for her? The worst of being ill like that and at the mercy of specialists is being alone in it, so having someone to lean on is essential. Often we feel too unwell to take charge of our own health. 

With her many symptoms it may require several doctors to find the cause, it is like detective work, so it is not surprising that she is handed from one to another. She should make sure she directs all of these specialists to communicate with her PCP. Whenever I see a specialist I follow up with m,y PCP after that visit to ensure he is aware of the findings of the specialist, this has been very important for me. 

I hope she will get some relief and answers soon. Best wishes - Susanne

 

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You friend has probably already done this but I finally got my diagnosis after handing a list of every symptom I had written down as they happened over a period of time. I have read in some medical articles that sometimes a list can really help the Dr to make connections and it  can be that the symptom that seems insignificant to the patient that steers them in the right direction. Personally I would not have remembered every thing that was going on too much brain fog .

I do agree with Pistol having another person with you makes all the difference for support and my experience has been my husband has been asked many questions about his perspective of my health, sometimes that validation made me feel more confident I would not be labelled a hypochondriac as I had been for years when I was single. 

My heart goes out to your friend it’s awful not understanding what is happening to your health, I hope she gets to the bottom of it soon . She is fortunate to have you as a friend ! 

 

 

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1 hour ago, dancer65 said:

You friend has probably already done this but I finally got my diagnosis after handing a list of every symptom I had written down as they happened over a period of time. I have read in some medical articles that sometimes a list can really help the Dr to make connections and it  can be that the symptom that seems insignificant to the patient that steers them in the right direction. Personally I would not have remembered every thing that was going on too much brain fog .

I do agree with Pistol having another person with you makes all the difference for support and my experience has been my husband has been asked many questions about his perspective of my health, sometimes that validation made me feel more confident I would not be labelled a hypochondriac as I had been for years when I was single. 

My heart goes out to your friend it’s awful not understanding what is happening to your health, I hope she gets to the bottom of it soon . She is fortunate to have you as a friend ! 

 

 

I agree with this but would take it one step further.  On websites like WebMd they have a symptom checker where you enter in your info.    They can guess what you have from a combo of symptoms.   It may or may not be in the right direction but it gets you thinking.   I would also read about the particular steroid she was given, the side effects from stopping it and from stopping steroids generally.    The best thing that patients can do for themselves is to be extremely informed and take of their own health and not wait for doctors to.  Your friend is very lucky to have you.  You can assist her, but ideally she or someone in her immediate family could do this.  I am saying this only because a friend tried to help me when I was first sick and totally guided me in the wrong direction - not on purpose, but because she didn't quite understand what was happening to me.    At the same time my parents were looking into it, and they figured it out fairly quickly because they experienced with me first hand. 

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Thank you all so much for your thoughts on this. It's truly appreciated. It's been hard to help her because I'm living at a distance, but like so many of you...I remember a little too clearly what it was like to be in that state of not knowing what's going on. It breaks my heart still and makes me angry hearing what all of you had to go through with this, and to see her going through something similar. Seriously, thank you for your kindness and taking the time to share your thoughts...it means so much.

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My friend wanted me to pass on a huge thank you to all of you too. Your experiences seemed to give her a lot more hope and confidence going forward, and she was so grateful for your compassion and kindness too.

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