Feeling severly ill
Hello. I am 44 and have not been diagnosed but i started getting bumps on my head at 18 while in the military. Now i have cysts or boils in many areas of the body. I am also very ill. Many trips to the ER. Always have been told that Im being treated for an infection but they did not know what kind or where the infection was. That made me feel better for a short time but then back to being ill. Ive asked drs about why im ill and they have no answers and im treated like a hypochondriac. Yet i am so ill. Am i alone with this?
You are not. I am on 2 1/2 years now, 4 Dermatologists, 3 family physicians, multiple trips to the ER, once the whole left side of my face was swollen like a balloon (Cellulitis). And I have gotten nothing other than one Dermatologist said that he feels I have "Follicular Occlusion Triad". He said I am a prime Candidate for Accutane.
Hello everyone. I just wanted to update yall. I had my appointment to take pictures for dermatology referral. It was quick and easy. They only took 2 pictures even though I have them all over. This is just to get my foot in the door i guess. Now its a waiting game because it takes many months to get seen by the VA drs and the dermatology department is about 3 hrs away from me. Ugh. Well lets see what happens.
oh I'm so very glad that you've been able to get some relief from the pain that sent you to the ER! What a stressful and scary experience. IBS can be so frustrating and tricky. And, it is a common comorbidity with HS, so you aren't alone in having this double diagnosis. Also, I wanted to let you know that we have a sister site for those with IBS, if you're interested in having a community with others who know and understand the specifics of what living with IBS can look like, https://irritablebowelsyndrome.net/.
As far as the itchiness goes, is that something that your doctor is aware of? I'm just wondering if it possibly started after you started your new medication and could be a side effect? (I have no idea, just thinking aloud.) But in any case, if you haven't already, I would mention it to your doctor in case it's something that can be addressed. That being said, it does sound like you've had a lot of symptoms and are already in good contact with your doctor.
I'll keep my fingers crossed that you continue to move toward relief and that the appointment in December goes well. Please, if you're comfortable, continue to keep us updated with how you're doing. Sending gentle hugs. -- Warmly, Christine (Team Member)Look up Follicular Occlusion Triad. Thats what I was told i may have
Thank you. No I haven't yet. My insurance is with the VA. I have had a hard time getting care. I have requested for a referral to see a dermatologist. All I can do is continue waiting and not lose hope.
thank you. Yes, tomorrow I have an appointment with PC to take pictures. They will submit them with a referral for dermatology. I will keep yall updated. I will keep my fingers crossed that it all goes well and you get that referral approved! -- Warmly, Christine (Team Member)
Hi there - I do hope that other community members share their personal experiences getting diagnosed with hidradenitis suppurativa, but you are not alone. Many of our community members have also experienced this. Have you had the chance to speak with a dermatologist about the boils you are experiencing? Sending you virtual hugs. -Rachel (Team Member)
thank you. No i have not been referred yet. I have an appointment next Friday with primary to take photos. They will send them with my referral and dermatology will determine if i am eligible.
