Multiple Sclerosis (MS) - please introduce yourself

I have ms & Lyme disease. I have several issues; my legs don’t work well (as stated above, I drag them around), I have neuropathy in both feet, my balance & stability are bad, I have a neurogenic bladder & bowel issues. I recently went to a new neurologist to get another opinion & she agreed with my current neurologist. Because I’m 67 & there hasn’t been any change in my lesions, since my diagnosis 20 years ago, there aren’t any medications that would be worth taking. The risk would be higher than the reward . There’s been disease progression, but no new lesions or changes. I recently tried gabapentin for the pain, but couldn’t tolerate 100mg & the dr said I’d probably have to take a much higher dose, to get relief. So, next we are trying lyrica. I’ve been using Capzasin cream, for the foot pain & it does help some. MS or Lyme, there’s no way to know. Any input would be appreciated. Thanks

I have ms & Lyme disease. I have several issues; my legs don’t work well (as stated above, I drag them around), I have neuropathy in both feet, my balance & stability are bad, I have a neurogenic bladder & bowel issues. I recently went to a new neurologist to get another opinion & she agreed with my current neurologist. Because I’m 67 & there hasn’t been any change in my lesions, since my diagnosis 20 years ago, there aren’t any medications that would be worth taking. The risk would be higher than the reward . There’s been disease progression, but no new lesions or changes. I recently tried gabapentin for the pain, but couldn’t tolerate 100mg & the dr said I’d probably have to take a much higher dose, to get relief. So, next we are trying lyrica. I’ve been using Capzasin cream, for the foot pain & it does help some. MS or Lyme, there’s no way to know. Any input would be appreciated. Thanks

Hi Pitou - I have tried gabapentin and pregabalin (Lyrica) for nerve pain with many side effects but you might consider trying Botox injections. Maybe you will tolerate it better and the Botox is supposed to stay localized although it didn't for me. You also mentioned Lyme disease and I remember having a blood test completed by an infectious disease specialist and it came back negative so that partially helped determine I had MS. Ask your doctor about it. I wish you all the best.

Thanks for your input. What are the side effect, of Botox? It may be an option, if lyrica is too hard to take.

My name is Erica. I have MS & Fibromyalgia, to name a few of the major ones. Oh, I also have a spinal stenosis and several compressed nerves within my spine. I was "formerly" diagnosed with Fibromyalgia in like 2015 but MS in 2018. I believe that I've had both for a very long time before those dates of formality. I suffer from a ton of pain, both muscle and nervous system related. I get swollen a lot because of the chronic inflammation. I've been to Neurologists, Rheumatologists, Spine Surgeons, and PCPs. Everyone states that my pain is due mostly because of my numerous spine issues - 1 major surgery down another 2 go because of issues with #1....the shortest way I could put it. I'd like to learn if others have the MS & Fibro like me? I'm wanting to gain more understanding about my diseases. I want to be encouraging as well as receive encouragement. My sleep is almost nonexistent these days so I'm fighting to survive most days (transparency).

In about 1999 I was in a bad car accident. I had many problems from it and an incredible pain in my left jaw that came and went. A jaw specialist found that my jaw joints were damaged. I had terrible pain. In 2002 an MD and DMD did a brain scan and told me I had M.S. I didn’t believe him and went to a different Maxillofacial surgeon, who removed my damaged jaw joints and replace them with my temporal flaps. That got rid of the pain for a couple years. The pain did come back. I tried many things to help the pain. In 2016 the same surgeon gave me titanium jaw joints. The bad pain was gone but I had some pain in my joints but it was a workable pain. In October of 2023 I had a return of the electric jolt pains of before the second jaw surgery. My neurologist thought it was trigeminal neuralgia and put me on oxcarbazepine 150 mg twice a day. It took care of about 90% of the pain. My Dr said sometimes that medicine will stop working. Any suggestions of other medicines in the future?

I haven't read the side effects for Botox because I think my brain would create them, so I only look up what I experience. I have had a brief headache and slight leg pain right after the injections but the next day heavy congestion which affects my balance and triggers vertigo. I should mention I have a lot of allergies (food and environmental) so this reaction probably isn't the norm. I also have increased anxiety which I'm told is because it can intensify a range of emotions. Its been almost a month and both are finally subsiding. But it definitely reduced the nerve pain and spasticity. I think Botox is only approved for spasticity but it still helps the nerve pain because my doctor said they are intertwined in some way. I think like which came first with the chicken and the egg.

The Lyrica worked really well. About an hour after taking my legs felt so light when I walked. I couldn't believe it - I felt like I didn't have any issues with my legs. But I experienced double vision at first and then pressure in my eyes which didn't go away. I stopped it then and my doctor agreed. But I have an appt with an opthamologist in a few weeks to get their feedback because Lyrica worked so well.

Gabapentin made my arm and shoulder tremor.

I hope you're not as sensitive as I am.

I would like to hear how you are doing going through the process. I don't know anyone with MS so I'm happy to share your thoughts.

Wow - I've never heard or read about anyone having both. Very interesting but I'm sure unfortunate for you. You are right it is sad that some doctors are so close minded. It's almost as if they don't know about it - it can't possibly exist. I live in WI now and have a great neurologist - I can't imagine you would be living in the area though. I am sorry for what you are going through. I'm so glad you replied.