Multiple Sclerosis (MS) - please introduce yourself

Mark Frattini

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What helps PPMS? How do you help organize thoughts and letting go of lack of control of things? I am a caretaker. This is new to them and me. Can someone explain what causes the body to feel like a core heating up and the extreme hot/cold changes. Hip/Joint pain what keeps it from getting bound up how

Dear Coleen,

I am on and off of multiple sites regarding pain, but my friend has MS and I read through this this morning. I just wanted to take a minute and thank you so much for everything you do for all of us on these sites. You go above and beyond and I just wanted to tell you how much it it is appreciated..

Leigh

Thank you, @leigh17. I appreciate that nod. It takes a village to create this community. I'm just the hostess.

I'm glad that this discussion has helped give you a window into your friend's experience. How are they doing?

I think everyone is doing wonderfully in sharing their own personal journey. Everyone is so supportive of everyone else. It really has become extremely helpful for me.

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?

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).

First, I hope things get better and brighter for you! I've tried SO MANY medications...I'm on like 15 scripts now, give or take, which make it extremely hard to have a greater quality of life plus severe sleep deprivation due to pain and mental health issues.
I've tried oxcarbazepine (2) (150 mg) in the morning and at night but found that it wasn't helping as much as I expected plus it aided in my very low sodium level (which Neurologist) told me but PCP didn't know that and thought it's because of hydrochlorothiazide. Also, I have excruciating muscle spasms since starting oxcarb...so much so that I was recently admitted to the hospital *stayed 4 days. I've received steroids very IV (10x the amount that they give someone who is having an asthma attack for 4 days) and still not touching the muscle spasms. It even made my breathing labored when they come on (like contractions). I recently went back on Cymbalta (Duloxetine) at 60 mg per day. It's helping more than I expected but again still having muscle spasms. I suggest trying it. I've had Pregabalin and Gabapentin but they make me swollen. Perhaps, you could try one or both of those. Hope this helps!

Hi I have PPMS . I am 69 years old living in Canada. I have had it for 10 years . My MS doctor tells me there is no medication for PPMS. I am experiencing difficulty with walking legs don’t want to move light leg is worse than the left.
Anyone with similar symptoms and PPMS have any suggestions ?

Hansa,

I am 74 yo female and I was dx with RRMS in 2015. I was put on gabapentin and Avonex injectable and have been taking both ever since. I just had a series of annual MRIs which show no new lesions (there were just a few to begin with; spinal tap confirmed MS 9 years ago) and that MS is stable.

I also have been dx with bladder and breast cancer in ‘18 & ‘20 respectively. I had a laminectomy of L3, 4, 5 & S1 last May.

I am on a boatload of medications. I have been in a quandry for some time now as to what is causing what between my medications and treatments. Chemo for breast cancer was not kind to me as lost hair and nails and it exacerbated the neuropathy I was experiencing as part of (we think) the MS. Radiation is hard to tell though I have some fibrosis. Now the neuropathy in my feet and legs is very uncomfortable and becoming a major concern for me. I also am experiencing a heaviness in my legs which is making walking any distance an issue.

I am showing signs on the recent MRIs of additional spinal stenosis and disc disturbance above the site of my past surgery which could be contributing to ongoing pain and dysfunction with walking.

I wonder which medications are contributing to pain, weight gain and general feeling of unwellness despite being prescribe to alleviate high blood pressure, hypothyroidism, sleep disturbance, estrogen levels and MS…it’s never ending…

I have a “concierge” PCP who should be the steward of my ship and while he has overseen my care fairly thoroughly and states I’m stable, my medical care is chopped up between specialists and none knows what the other is doing or prescribing and that makes me crazy. I have been seen at Mayo Clinic, went to MD Anderson for 2nd Breast cancer opinion, saw another private neurologist and came away exactly the same as I went in.

I’m finding it harder and harder to accept that this is how I should be feeling and while my PCP is retiring, I will seek out the doc who bought his practice and examine his care plan for me. He has a different approach I’m told, more holistic with different options.

I think this is very much the state of wellness for those of us with multiple issues and comorbidities. Finding answers in today’s healthcare system is so difficult. I would encourage a thorough conversation with your doctor as there is a spectrum of medications to treat MS…such as Ocrevus, prescribed early in your PPMS dx…it’s an infusion. There are beta interferons and meds for secondary progressive MS…You’ll find many have done their own research and are willing to share.

Good health to you…