Other Symptoms

[Golfer68]

Hello everyone 

wondering if others have CNS symptoms as well?  Specifically, I have constant tinnitus as well as muscle fasciculations in my legs.  Both are 24/7 but severity does shift day to day.  I have been to a neurologist to rule out MS, ALS etc as I’m on Simponi (immunosuppressive drug) for my RA which can sometimes trigger MS.  Results of that assessment was inconclusive and just deemed  benign and not related to one of those diseases.  Now I’m questioning if it’s related to herpes virus.  

[Flowerteacher55]

Hello! 🙂 

I am so sorry that you have been experiencing such intense central nervous system symptoms. The nervous system can be impacted by so many factors, herpes being one of them. It is great that you have already rules out MS and ALS, among the other possible diagnoses. 

I am not a doctor AT ALL, but I think that possibly, because you are on a immunosuppresive drug, your immune system could have been lowered, which then in turn could cause HSV to flare up (since your immune system isn't as strong to stop/inhibit the HSV with antibodies and such). Again, I am not a medical professional, but that may be possible (I'd ask the doctor that prescribed the Simponi, or ask a pharmacist, they are SO helpful since they understand the biochemistry of drugs). 

Did you start these symptoms before or after you started Simponi?

Also, the tests were deemed inconclusive, so maybe a second test would help? Usually they do a spinal tap to test the spinal fluid, so if you haven't gotten that done that might help narrow things down, too. 

If it is due to the herpes, have you noticed any other herpes symptoms that you've experienced before? Has your herpes affected you previously (have you had very frequent outbreaks, experienced nerve pain, etc before?). If this is herpes-related, please know you are NOT alone. Many people have severe herpetic-neuralgia, so if you wanted your doctor to look into the connections between Simponi and the activation of herpes and post-herpetic neuralgia, it might help! 🙂 

I am so sorry you aren't feeling well. I am sending you prayers of health and happiness!

Blessings ❤️ 🙂 

-- Grace

[Almostperfect]

This is absolutely herpes related. I have the muscle twitching and didn't have it until after my diagnosis 11 years ago. I went many years with a mild outbreak maybe once a year and no twitching. Now I'm having frequent outbreaks, twitching, and my lymph nodes are swollen on one side of my groin. Same issues as when I was first diagnosed. But I'm on suppressive therapy now and just hoping it will start working. 

[Flowerteacher55]

Hello! 🙂 

I am so sorry to hear about the neurological symptoms and swollen lymph nodes. That sounds terrible! 

The neurological impacts of HSV can be so scary, and the biology of how herpes dwells in the spinal cord never ceases to amaze me. 

It's great you started suppressive therapy, I pray that it works for you ❤️!

Stay strong! ☀️ 

Blessings,

Grace