Multiple Sclerosis (MS) - please introduce yourself

Hello @xannab and welcome to Mayo Clinic Connect. I can imagine you are nervous to learn of another potential diagnosis. How long do you have to wait for your endocrinology appointment?

I am still waiting to hear from my doctor.

Finally have remaining appointments scheduled for the first week of July. Had another "episode" yesterday. Do you know of any support groups for MSA? I imagine since it's really rare there is not one. I have never seen a group for just PPMS either. Just curious. I would love to speak with someone that can answer questions or atleast listen to my fears and give me some guidance/support.

It's pretty amazing at the variety of experiences each person on here has had. I just popped in to share my story as well.

43yo male, lost 30lbs in the last year due to fasting, C19, and the stress from my initial diagnosis (and thinking every little ache was cancer since evidently I was doomed by my diagnosis - plus I had a recent close family friend who lost a family member due to fulminate). Symptoms at onset (early November '22) were:
-- a feeling like I was walking on socks/severe inflammation on the bottom of my foot in front of my heel - but obviously there was none
-- moderate loss of sensation from the waist-down
-- right arm lost some sensation and became very tingly/pins and needles from the elbow down

Initial MRIs showed 3 lesions - 1x 6mm in my left occipital lobe, 2 smaller ones in the frontal right lobe. CSF showed very slight elevation in MBP and bands.

Neuro prescribed 40mg Copaxone, still waiting on my first doses to finally arrive due to insurance/delivery service debacles.

I had 3x 1,000mg Solu-Medrol infusions leading up to Thanksgiving, and my sensation waist-down completely returned, and feet now only have a mild tingle to the bottom - no sensation of inflammation (unless I wear shoes with significant arch support). Right arm really hasn't changed.

I'm hoping with my dietary and lifestyle changes (focusing on whole foods/raw fruit & veg, cutting out as much gluten/corn/processed meats as possible, and jogging/arm workouts to help with the areas I first had symptoms in), along with the DMT, that I can give myself the best opportunity possible.

One of the hardest things I've found so far is dealing with the uncertainty. It's caused some nasty anxiety - and really brought out the hypochondriac in me.

I know my case is probably pretty mild

Hi I am 68 yrs old woman was diagnosed with Primary Progressive MS 5 yrs a go. Have numbness in my legs . My MS specialist has not given any medications to me yet.

So on 12/5/22 I was diagnosed with MS - seems fairly mild at this point. A few years ago a firearm went off next to my head and I've had tinnitus in my left ear ever since. I saw an ENT and they said it doesn't appear to be any physical cause at this point. Back in November after initial MS was suspected I went on a 3-day SoluMedrol infusion run (1000mg daily), and now I'm on 40mg Copaxone 3x weekly. Recently I've started having minor head pressure in my temples - much like mild sinus pressure - somewhat regularly... it typically resolves within minutes without any medicine/etc. The more concerning issue is I'm now periodically getting what I believe to be ice pick headaches. It's just a brief flash of pain, roughly 2 inches above my left ear - maybe slightly forward of my ear. It happens so fast I barely feel it coming on, and it goes away within seconds. I haven't been getting the best sleep lately, and the job has been bit stressful, but I went ahead and shared with my neuro to be safe. They feel it's nothing MS-related. Just wanted to throw it out there and see if anyone else has had similar experiences, and what their response has been. I've seen a number of articles saying that MS tends to cause things like ice pick headaches (assuming that's what it is) - that sometimes it's a sign of relapse, other times it's just a combination of sleep/stress/caffeine/etc. Still very new to all this, just trying to figure out what "normal" looks like.

Hello @nightops. I wanted to more quickly connect you with other members who have experience with MS, so you will notice that I have moved your post into our MS welcome discussion, which you can find here:
- Multiple Sclerosis (MS) - please introduce yourself: https://connect.mayoclinic.org/discussion/multiple-sclerosis-ms-please-introduce-yourself/

Would you say that you are taking care of yourself in terms of adequate sleep, reduced stress and caffeine levels? Stress seems to be one of the main reasons some of the members on Connect report for having ice pick headaches so thinking if there is a way for you to dramatically reduce that through self-care and good sleep, it may be worth trying for a week to see if you can gain improvements. Maybe even journal your sleep hours and stress level each day and then your pain scale to see if/how it improves?

Hi I am 68 yrs old female was diagnosed with PPMS in 2017. Any suggestions on how to cope with extreme fatigue and numbness in toes and fingers.

hi, i'm 64, with secondary progressive ms, officially dx made in 94 but likely onset 89. Symptoms, balance problems & right niw trugeminal neuralgia, loss of bowel control, and depression, which at the moment is becoming intense. can barely sip water. meds for tn make balance so scary haven't showered in almost 2 weeks. My insurance people are going to get me a shower chair.

Really angry I can't drink coffee. Have been sipping it but it gets cold so fast. Expecting caffeine withdrawal headaches. Caffeine is my antidepressant.

Sleep... why bother? The people next door wake me up at 8:30 a.m. I go to sleep at 4 a.m. When the world is nice and quiet.

I have had Trigeminal-Neuralgia since 2005. It started small. Which it came on short shocks. Then it increased in my face longer and longer. My 1st neuro DX me in July 2006 Multiple sclerosis and TN. I thought I went in denial and in 2008 I had a facial shock over an half hour. My face was like the art the scream. Luckily my neuro put me on carbamazepine which took a half hour to work . My shocks started on The right side of my face. Which over time it went to my left side. Now it's on both sides . And of course my carbamazepine stopped working in 2022 at 1200mg. Spent 3 months not eating or drinking or talking. And then a hospital visit for fluids and second neuro tried oxcarbazepine. Which I am on 1200mg. Neuro said I will have to Try procedures next. I saw a neurosurgeon and he said it will come back. I hope this medication works
For a long time. And then all my other MS problems I think
My TN is the scariest right now.