Signed up last week. Didn't know what to say or where I was going with this. Now maybe I do.
I am recovering from Optical Neuritis. From the symptoms, thanks to the computer, I thought I new what it was. After many doctors of all kinds, I went to the Rheumatologist Friday. She has no doubt it is MS with all of the symptoms and test results and she also has no doubt it was either caused or unmasked by Humira, I was her first case like this and there was no way to tell which one it was and she could do nothing else for me except pain relievers, Vitamin D and Calcium expansion since the steroids just leached my bones of everything I had. 6000mg in 5 days a few weeks ago. When considering putting someone on a TNF inhibitor,they go by whether or not you have a family history she said and I didn’t have one. Um, I have read so much info on this I know that although it is highly likely genetic it is not hereditary, so the family history is garbage. I go back to her in five months because she wants to keep up on my case. I guess I am now a test case for her.
She is on the Enbrel/Humira board. The warnings on Enbrel are more specific. Actually naming demyelination,optical neuritis and MS as low probability side effects and more, stating that all TNF alpha inhibitors/blockers are included with these warnings. Humira was so basic in it’s warning I wouldn’t even realize they were talking about neurological effects if it didn’t state it in the lead in on the bottom of page 9. Numbness and tingling are carpal tunnel or pinched nerves also and vision changes. What’s that? Could be you need glasses. Paralysis would be something that would get your attention no matter what. If you could move enough to get to the doctor you would go immediately and they would know something wasn’t right. I had “vision changes” and was trying to get answers a full month before I finally got to the point of being legally blind in both eyes and went to a medical doctor on my own advice, because no one else put anything together and Humira was brought up every time I went to any kind of doctor. Optometrists, Ophthalmologists, medical etc. Even the Neurologist took 3 weeks after I had seen him to get in contact with the Rheumatologist about it, even when it was one of the first things out of his mouth. I made the initial call that day. Their records were so inane that when they called me three weeks later after they told me to go off of it when I called, they called to tell me to go off of it. Not to remind me to make sure that I did. It was as though it was the first time it crossed their table. I also had told the GP that sent me to the Rheumatologist, and marked down on the sheet the Rheumatologist gave me the first time I went there about my severe weakness and numb spots as well as my draggy foot along with the bone pain. She heard ulcerative colitis and bone pain. She said it would not do much for the UC but it would help the Iritis.
I look at it like 9/11. It would have never happened if the CIA and the FBI were up to speed with each other’s info.
I just want them to , right after saying“ I’m going to put you on, but there are some risks” include the neurological risks along with the cancers. Maybe everything. Explain what they mean by “vision changes”, don’t run a carpal tunnel test when complaints are voiced about tingling and numbness without asking some questions and raising some other possibilities.
Low risk is not the same as no risk. There is relatively a low risk that you will be killed in a traffic accident going to the store three blocks from your home, but the first time you get into a car you are warned to look out for things that may lead to it. You may get blind sided and can’t avoid it, but when you start driving, they don’t just put a pamphlet in the glove box and figure that you have read it. And I don’t remember them giving me a literacy or an IQ test either.
The Rheumatologist is hoping that stopping the Humira will reverse or at least lessen some of the effects of what is now certainly MS, If that is so, I could have stopped the Humira early enough that I may not have had to use all of my 3 weeks vacation and incurred thousands of dollars so far after insurance, in medical expenses not including gas mileage.
That’s where I was going with this, because I bet that there are no doctors anywhere that do anymore than what mine did. Otherwise Mayo would be out of business.