Multiple Sclerosis (MS) - please introduce yourself

Hi to all here and thank you for the opportunity to share my story. I was diagnosed with Systemic Lupus in 1999 but have struggled with muscle pain and other weird sensations from childhood on. I regularly see my rheumatologist and am being treated with plaquenil and two immunosuppressants. I just had an appointment last week that started out as a normal examination, then took a turn. He began to question me about different symptoms that I have and the numbness and tingling in my leg, a new vision problem and increased fatigue. Whatever I said led him to suspect that I may have MS. I’m having an MRI and a nerve conduction study soon. This was a very surprising development and I have had trouble accepting the possibility of something else going on. It took years to diagnose my Lupus and I just don’t want to go down this road. I feel overwhelmed and very discouraged and have considered just canceling the appointments and ignoring the whole thing. This is not the way I usually deal with things so I am surprised at my emotions. Has anyone else experienced this when faced with a new diagnosis? I would like to discuss this further. Thank you for listening.

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

Erica, If you would refer to my lengthy response to Hansa you’ll read that I have multiple comorbidities and what I didn’t mention is that I was dx back in 1982-83 with Fibromyalgia. At that time it was my only clinical dx and my doctor downplayed the whole thing telling me I should see a psychiatrist and hit the gym…it was then that he began to prescribe various SSRI’s to see if they’d help alleviate any physical symptoms. I think he thought they’d also calm me. I had no evidence of any psychological issues and am of the nature to tackle things head on and figure out a way to deal with what comes my way. SO, what we now think is that the early fibro dx was probably my 1st recorded exacerbation of MS. I then “learned” to deal with the pain and discomfort for decades until I couldn’t anymore. That brings us to 2015 when I was dx w/late onset MS. I have no clue if the fibromyalgia is still an aggravating part of what is going on with me as I am seeking relief from any pain I might be experiencing. I am scheduled to see my neuro surgeon later this month review the findings on those most recent MRI’s.

I hope you receive some support and definitely encouragement to continue to seek answers for your issues…I hope to find in my new PCP an approach that is wholistic for mind and body and that he knows some Pharmocology as all the medications I take have effects on one another and obviously, me…finding a physician or team who can “look” at all of you would be my recommendation. They are most likely found in teaching centers and NHIS program’s. Good Luck to you…

It's interesting that you say this! Thank you very much for taking the time to respond. Yes, I frequented the hospital (mostly through the ER then through PCP offices) many, many years before (dating back to 2009). Our stories seem to cross. I wish you blessings of pain relief sooner than later. Bless You.

Hi @pitou thanks If Lyrica doesn't work, try the generic version "Pregablin." My balance and stability aren't great. Additionally, there are other neuro issues. Maybe something like Hydroxyzine may help the itch associated with the neuropathy (if and only if itching is involved). Wishing you continued blessings!

definitely @twinkie23 have felt this way before but I had to rely on my faith (Christ) to steer me back, and quickly, because that was a dark place that I'm not willing to sit, stand, or even lie in. I pray that you do find your faith (whatever that looks like). This is no cliche nor story tail! It was at my lowest point, I find strength to strive, to believe when believing is/was hard. You could have Lupus & MS. I'm the type that would rather know than wish I had known (once I'm at the end of my life). Bless You. Love your way~

Thank you for the input. I don’t have itching (thank goodness), just lots of pain. I just read about R lipoic acid & bought some. I’ll try it before trying lyrica. Thanks, again.

Thank you for your encouragement. I have a strong faith that was MIA for a couple days. I had my MRI today and I am scheduled for a nerve conduction study on the 13th. The Lord gave me the strength to get through the test and He will continue to be with me.

Hi my name is Donna and I was diagnosed with MS in 1994. I have several several other issues but have been doing fairly well. I had to stop working in 2016 due to cognitive issues. I recently tried Botox injections for nerve pain in my right leg but I'm not sure if the side effects are worth trying it again. I am unusually sensitive so most medications affect me in one way or another. The Botox significantly reduced the pain with only 100mg - I read online up to 400mg per treatment is acceptable. I've noticed others have commented on nerve pain so I will reply to those that this new treatment might work for you.

Hi Terriann - I'm sorry you have so much to contend with right now. A psychologist told me when I was diagnosed that 'you can't worry about something that might never happen' and that has helped me a lot though the years. You have to do whatever you feel comfortable with regardless of anything anyone else tells you. It needs to feel right to you. MS and Lupus seem fairly similar to me. My first cousin has Lupus and our issues seem similar so it might not be much different from what you are experiencing right now. I recently tried Botox for nerve pain in my leg and it has made a tremendous difference. Hopefully you can look into it. My thoughts are with you.