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First Name
Barb

State/Province
WA

Posts (29)

Nov 17, 2019 · Post Interferon Syndrome in Infectious Diseases

Hi @seakay,
Thank you so much for responding. Much of what you report about the symptoms you have are very familiar although I do have some differences. I think that will be the case with any one of us that has gone through this hell. I do have a primary care provider., a rheumatologist, endocrinologist, a cardiologist and go to a pain clinic. I was really hoping that “post interferon syndrome” would be the magic answer that would lead to one doctor that would have one treatment that would “cure” this illness, but that sounds like it is a dream that will never happen. I have tried cpap with no luck. I had to smile at your remarks on post exertion malaise. That is a term have never heard before but definitely can relate to. I know that every time I spend too much energy I may pay for it during the following days. I was also amazed at your comprehensive list of symptoms. It is much like what I suffer from with just a few differences. I don’t suffer from 5, 6, 17 or 19 and was so glad to hear that I am not the only one that can’t read for pleasure anymore. As a lifelong book lover that has been one of the hardest things for me to come to terms with over the years.
Thank you again for sharing your thoughts. It does help to know that one is not alone in this world

Nov 17, 2019 · Post Interferon Syndrome in Infectious Diseases

I have never heard of google scholar but will see what I can find. Thanks for sharing

Nov 17, 2019 · Post Interferon Syndrome in Infectious Diseases

I am so sorry you can’t get the medicine that helps you. Are you sure it’s that it is not just your particular doctor that won’t prescribe the meds that helped you? I am on so many drugs now that I can’t imagine someone telling me I had to stop the ones that make me feel at least a bit better.

Nov 16, 2019 · Post Interferon Syndrome in Infectious Diseases

Hi Barbara from another Barbara. I am 24years post Intron Interferon Alpha 2A. I was given 10 million units of interferon intermuscular shots three times a week for 52 weeks. It was a drug trial and that was the only drug I was given other than some pain pills after life became unbearable. I have felt sick since the day I took the drug. Other than the time I took off for treatment, I did manage to keep working up until three years agowhen I came down with two autoimmune disease. I worked for community colleges for most of my work life and truly miss the students and other staff members. I feel like each day I lose more ability to do just about anything.
I am trying to find treatment for Post Interferon Syndrome that I know I have without ever having a doctor diagnose it. I hit every symptom on the list I found on this site, but now am trying to find a doctor to treat it. I don't know where to turn so I am hoping someone will respond and maybe help both of us as we struggle to get better. I sincerely wish you all the best and hope someone will reach out to both of us with some answers.

Nov 15, 2019 · Post Interferon Syndrome in Infectious Diseases

I also was treated in 1995 and have been sick ever since. I was able to work up until 3 years ago and am now on disability

Nov 15, 2019 · Post Interferon Syndrome in Infectious Diseases

I was one of the first people to ever undergo treatment for hep c. I was given an incredible amount of interferon alpha two A although I have been told it must have been alpha 2 b, but I no longer have any paperwork so I don’t know. It was in 1995 and was an experimental treatment. I saw a specialist who wouldn’t allow me to tell him about the side effects I was having except for my top three. I would try to show him my list and notes about all the awful things I was going through but he was very firm. If you don’t like it you are welcome to quit but you will die. During that year I lost over 50lbs and was in so much pain and very weak. He told me my pain was fibromyalgia that would definitely go away when I was finished with treatment. He sent me to a rheumatologist for that who was one of the leading rheumatologists in the country when it comes to fibromyalgia. He told me that there was no hope that fibromyalgia would go away. He said there is no cure but doctors due their best to help control symptoms. All these years later I am not better and in fact the symptoms only get worse the older I get. I am looking for help because I have so many crazy symptoms that doctors don’t know what to do so I get shuffled from doctor to doctor with no real relief. My sister-in-law found this site and sent it to me with This is you! So now I am here to ask for help. Is there a doctor or a clinic that specializes in this syndrome? I would go anywhere to finally find some help
Barb

Aug 11, 2019 · The Dreaded Pain Scale in Adult Pain Medicine

I thank you for this too. It really helps put pain in perspective. In all the years I have been going to rheumatologists and or pain clinic no ever gave me something so clear. I appreciate you sharing

Aug 5, 2019 · Severe leg pain in Chronic Pain

Did you look up guillain Barre Syndrome? It would explains a lot if that is what you. I don’t believe your symptoms are all in your head. Please take care and definitely go back to the hospital if symptoms are worse or your doctor for help if you aren’t getting better. There are so many people that care.

https://www.mayoclinic.org/diseases-conditions/guillain-barre-syndrome/symptoms-causes/syc-20362793