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1. 

   evie

   101 Kudos

   11/12/09

   Hi,
   
   Sorry I have only just been on my home page and seen your message!!
   
   It has been 6 months now since I became really ill, and I am still in limbo land. I was given the POTS dx then that was taken away when they found the adrenal growth, now I have 'suspected' POTS!!!!!! It is a living nighmare!!!! No one will commit themselves to a dx for me. But I do feel inside that the growth is partly to blame. I am due for another MRI after christmas to see if it's grown. I have read extensively on POTS, POTS symptoms and adrenal growths etc - as i'm sure you have too. One thing that I did find though was that growths (that are not functioning or have been proved not to be benign) can cause POTS symptoms many years before they are found in the body. So I would prefer if they could just take this thing out.
   
   Many of the symptoms I have read that you have I also have. I have a list for my consultants of things I want to be tested....they will love me on my next visit.!!! I am having quite a bad week this week so it's making more determined to push them.
   
   How have you been? I have read you experience blood sugar drops. This happens to me to, seems to be in clusters. It will happen for a couple of weeks then balance for a while and so on. Although sometimes, I feel like they are really low but I check and they are fine!!!! That confuses me.
   
   I was in my GP's office the other day and as I was leaving I nearly passed out. I had to lay down and she checked my bp and hr which were both very high (they were normal 5 minutes before) and she noticed I developed a rash over my chest neck and cheeks!!! Something I have not noticed before. She was determined I was going back to my endocrinologist - she believes it is this growth.
   
   How do you cope with your symptoms? I hope you have good support. Do you visit the Medhelp site? I am a member there of the Dysautonomia (autonomic dysfunction) forum and it helps me greatly. There are many knowledgable and supportive people who would help you in your battle for answers and dx. My forum name is 'Evo123'. Have a look and see what you think.
   
   My private email is alishafyffe@aol.com
   
   Kind Regards
   
   Eve
   
   
   
   Original comment »

   11/12/09

   Reply from sue1214:

   I wanted to add the moderators are making me mad! Everytime I post something they are grouping it with all my other posts, and sometimes they are completely different questions/topics. I just posted something that might make them mad, but I am so tired of hearing that "if you didn't test positive on the PFM, then you don't have a pheo, and maybe you need to look at other causes for your symptoms". I am beginning to not feel welcome on the pheo board and I've been there for a few years now. I've noticed a big drop-off of posters, and am beginning to wonder if they were driven away.
   

   I will check on the Medhelp site. Thanks for letting me know about it!

   Karen(sue1234)
   

2. 

   evie

   101 Kudos

   06/19/09

   Hiya,
   
   I have just seen your old post RE: first diagnosis as pots!! I have been unwell on and off for a couple of years and this time I have been unwell for 7 weeks, I have just placed a post regarding this. The Dr thinks I have POTS even though an MRI scan found an adrenal growth, so I am not convinced. My bloods and urine were normal and this is were the confusion came. Is this what happened to you and how are you doing now? I hope you are well and I look forward to chatting soon.
   
   Eve

   08/11/09

   Reply from sue1214:

   I am sorry it took so long for me to reply! I just noticed I had your comment!
   
   I am still fighting POTS, but still feel it could be related to my adrenal nodule. I haven't made much progress.
   
   What about you?

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