Experienced MS Folks
Hello Everyone!
I am newly-ish diagnosed with MS, (not sure what type, I've yet to see a neurologist) I have a consult with neuro. (June 25th) but, until then I am waiting, and wondering about the true prognosis of my MS.
I know that there's no way to "tell" what type of MS you have "at home" per se, and I know I can't figure it out by comparing stories with other MS folks because everyone's experience and MS diagnosis and prognosis are completely individual.
But, I'm curious... Does anyone have any tips about that? I can tell you my symptoms and maybe someone else has a similar MS journey. :/ I'm just really struggling to wait another month to see the neurologist.
It's been 4.5 years since the onset of my first symptoms, and I can tell you that my MRI notes say there is evidence of "demyelination of (MS) type," I am currently I do believe experiencing a relapse at the moment it started with MS hug 2 weeks ago which lasted about 4+ hours, and then my dysethetic brain pain felt "different" than usual, and much more painful, and has continued to be. :/
I also have bilateral trigeminal neuralgia+ occipital neuralgia, 2 bulged discs in my thoracic spine, and a bulged disc between C5-C6 in my cervical spine.
My other symptoms include: bladder urgency (at times), 24/7 slight constipation (I eat 30+GMs of fiber per day, its still not enough+ I take Metamucil) (still doesn't really help), I get paresthesias all over my body- mostly my wrists, fingers, palms of my hands they often feel itchy, burning, tingly, sometimes my finger will randomly feel like its in physical pain even though I've done nothing to hurt it.
I get the "feeling" down the back of my leg calves of "ice cold" water "trickling" down the back of my legs but, I've not spilled water on them at all.
My entire neck, throat, lymph nodes, and collar bone area is "numb" and super itchy some days, with "electric shock pains" and I have the "lump" feeling or "frog in my throat" feeling even though there's nothing there, and I know that.
I have significant brain vein hypertension according to what the notes of my contrast MRI scans say, but they found no occlusions in these scans, no reason for narrowing of veins apart from occipital neuralgia and MS.
I get "pins and needles" and pain feeling on the bottoms of my feet, I have noticed lately that I bite my cheek and tongue a lot more than before, I have had a couple of troubles with swallowing but not a ton, just usually when I've forgotten that I have to be mindful because I have MS and things don't always work as they should when trying to eat.
I have terrible temperature intolerance! Most days my temp is all over the place one minute I'm way too hot, (drink some ice-cold water) 10 minutes later I'm freezing and putting a sweater on, and 10 minutes later I'm taking it off again some days.
Lately I've noticed my dysethetic brain pain gets much much worse if I sweat considerably or slightly overheat, even if I drink water to cool my core body temp down, the next day my symptoms are worse. I think I might still be in the midst of a relapse.
So its been 4.5 years approximately of having MS (pre-diagnosis), I've possibly had my 1st relapse, and it's still ongoing (3 weeks now).
I've had minimal issues with balance but, I am noticing small things lately if I stand up too quick after sitting for a bit on a chair or sofa, sometimes I have to remember before I take a step to walk, to hold my arms out side-to-side for a little extra "balance." I've not had any falls yet though!
But, I've never been good on my feet, I've always mastered the art of being able to "trip over my own two feet" even whilst standing still or taking a single step lol. I've had many leg, ankle, foot fractures and sprains that more than prove that to be the case.
I am also finding my mind starting to get a tad slower, not noticeably so, but, enough that on certain days I know for sure my brain is incrementally in the smallest of amounts getting a little bit "worse" off from week to week.
Previously, (6 months ago) I was having paresthesias (genital pain randomly, nipple pain,) I also have abdominal area pain, sometimes chest pain as well.
I drop things I'm holding extremely often, I often "dribble" water if I'm trying to take a sip from a water bottle, sometimes I have muscle spasms in my wrists and if my hands are holding something my wrist will fling that object at random times some days.
I have major spasticity (leg cramps, calf cramps) at night, and foot cramps, (I drink 3-3.5 L of water per day) so surely I'm not dehydrated. Pins and needles feeling in my buttox as well.
Does anyone else have similar symptoms or a similar MS journey? I'd love to hear from you if you do!
I'm also curious- what DMT or MS meds do you take for your type of MS? I am not yet on any meds, and I'm familiar with the names of them, did a bit of research, but, its a tough choice, I have no idea what I will go with yet (I'm sure it depends on many different factors) per individual but, I'm wondering what my specific options will end up being.
If anyone has any tips, suggestions, comments, etc - Let me know! I'm all ears! :) Newbie here :/ haha!
Thank You!
- Cal
Hey lovely, alway feels strange to welcome someone to the club but WELCOME 🙂 I have a cool website in Aus that is helpful understanding MS types. I don’t know what’s in Canada but probably something similar. https://www.msaustralia.org.au/types-of-ms/ MS sucks but just give yourself time, good days will come your way. Just hang in there and be kind to yourself 🫶🏻
I'm sorry you're going through this, I know this limbo period is a difficult time and you're just trying to figure things out at the moment. The first thing is that you may not have a diagnosis of MS yet. The neurologist will be able to confirm. It's confusing I know, but just because your MRI says lesions consistent with MS, you sometimes need a lumbar puncture to confirm. This is based on the McDonald criteria. https://mstrust.org.uk/a-z/mcdonald-criteria. If confirmed, you will be given a diagnosis of either PPMS (primary progressive), SPMS (secondary progressive) or RRMS (relapsing-remitting). The last one is over 85% of new diagnoses so that's probably what it will be. PPMS is diagnosed mostly on the presentation of rapidly declining mobility, and SPMS follows about 10-15 years following diagnosis of untreated RRMS. Your prognosis is unknown but will be substantially better with a good DMD. The high efficacy ones are tysabri (natalizumab), ocreluzimab and Kesimpta. These have risks. Your neurologist will explain if you qualify for them. Your age is on your side, as is the fact most of your symptoms appear to be sensory. You describe a lot of symptoms. I'm sorry, but it is very likely that not all of these are MS. The bulging discs have nothing to do with MS. If you have raised intracranial pressure (as you say on your MRI) your neurologist may look at an alternative way to treat these. Difficulty swallowing is an advanced MS symptom and other times is more often a presentation of anxiety (natural, given you're going through diagnosis and have these other symptoms). You can calculate your EDSS score with an online calculator. https://www.mdcalc.com/calc/2146/expanded-disability-status-scale-edss-functional-systems-score-fss A major criticism of it is that assigns too much importance to mobility rather than other symptoms and it has gone out of fashion a bit, but its what is generally used to track progress. Good luck. A positive attitude and looking after yourself are under-estimated tools in the management of MS!