RA,AS, neurological symptoms?
Hello!
I am new to the forum and just started going through with some general search information.
I have had RA for 17 years and was recently diagnosed with AS. Along with the HLA -b27 gene and the severe lower back pain I also have cranial head pain and what I can only describe as internal vibrations or tremors. You can’t see them, but I feel like my insides are electrically charged – I was just curious if anyone else has these symptoms and found any relief. Struggling to find a medication that treats both diseases at this time.
Hi
welcome to the community. You will find lots of information on here and we are here for support. I am sorry you are going through all the pain and symptoms. I can relate so much wanting to find a treatment to help.
I know you can find something. For me it took a bit of time. I am on biologics right now and it's help with moving more and lessen the pain. I still have days where I get flares, but it has helped manage to help me get out of bed.
Hope you are able to find something soon. Have you tried biologics ?
Nicky (Team Member)thank you for your response. Ironically, I have had RA for 17 years and unfortunately never found a biologic or medication to work. I have been on prednisone the entire time.
Now, with the addition of ankylosing spondylitis, we are trying infusions again.The jAk medications were working great until it affected my liver and blood counts and had to go off of it. Currently just started simponi and fingers crossed! I also try to incorporate as much holistically as I can – just hoping to give my body and the medication the best opportunity to work!
I think the challenge my rheumatologist is having is how to treat both diseases.
I appreciate all the information on here.I hope everything goes well with your treatment. Sounds like you have a great rheumy on your side.
Sending all the positive vibes your way,
Nicky (Team Member)
Hello and thank you! Yes- I’ve seen 2 neurologists and completed brain and full spine MRIs and had nerve testing done. Everything came back normal :/
Welcome to Axialspondyloarthritis.net, Kasdance! It's great to see you are engaging with other members and posting questions. AS can manifest differently in individuals, and the severity and progression of the disease can vary. Everyone with AS is unique with different symptoms, various levels of pain and fatigue, as well as diverse tolerances to the disease.
I cannot say I currently have "electrically-charged" vibrations or tremors but I have in the past. It was when screws for my fusion plate in my cervical area broke and the fusion plate pushed on and damaged my spinal cord. I'd have what felt like charges going up and down my spine.
Have you seen or discussed this feeling with a neurologist for this issue? It may be neurologic, and there may be treatments and options to consider for this. This disease in later progression fuses the spinal vertebrae together and can affect spinal nerves, and cause neurologic issues.
At the time I had surgery to fix the failed fusion, and was put on Neurontin for nerve and radiculopathy issues, and it helped. Hoping other members chime in and offer their experience with this ... Sending hope your way. Warmly Rebecca (community moderator)
