Post # 1
First things first: Yes, I’m going to the doctor soon.
Now that I’ve said that, does anyone that has MS mind sharing their symptoms?
I’ve been having major bladder issues (TMI- but pee my pants bladder issues) and am always hurting, and randomly see dots in my eyes and am ALWAYS exhausted and when I was looking up those symptoms MS came up. My grandmother had MS, so of course now I’ve scared myself into thinking I may have it.
My question is about the pain- I’ve read that it’s a different kind of pain that people with MS feel and that it’s hard to describe. But I don’t really get what that means. Can someone please share their experience?
Post # 3
So, I am not a neurologist, but I am a doctor, I might be able to explain it a little to you. First of all, I would like to say that I am so sorry about your diagnosis, I am sure it must be very distressing, and I hope that you have good people around you during this time.
MS is a tough disease, and kind of unpredictable, it can come and go, be constant, or progress slowly over time, sometimes swiching from the relapsing/remitting to progressive. IT can affect many different aspects of the nervous system. The pain usually comes from irritation of the nerves, though I havene’t experienced it myself, the way it is described, it can be at times a burning pain, or shooting/stinging type sensation. You may have this or you may not, not everyone willexperience the pain, and not necessarily all the time.
Good luck with everything, if there is anything else I can answer let me know.
Post # 4
Definitely get yourself checked out. MS can cause a broad range of symptoms (basically it can affect anywhere in the central nervous system), and every case is a little different. Your symptoms could be MS or it could be something completely different – the only way you’ll know is if you go to your doctor and get properly investigated. Trying to self diagnose yourself on the internet can be dangerous – not all sites are reputable and you can cause yourself a lot of unnecessary distress. And you don’t want to lead your doctor into being focused on one diagnosis only – depending on what your bladder issues are, investigating MS is probably reasonable, but they should probably consider other things – for example anaemia, spinal problems, B12 deficiency, thyroid problems, arthritis, basically without knowing specifics it’s a very long list.
Post # 5
I don’t have MS but my bestfriend does. She was 28 and 2 weeks post her wedding back when she was diagnosed 5 years ago. Being diagnosed is devastating, but like PP stated, having good supporting people around you will be incredibily important.
That being said, you already sound like you are very symptomatic, if not of MS than of something else. It’s crucial that you get your butt into a neurologist to either diagnose or rule MS out. MS Is scary, but its very manageable and the sooner you start managing it the better off you’ll be with less symptoms and damage.
ETA: My friend has gone on to have 2 gorgeous healthy super cute über smart children.
Post # 6
Sorry to hear about your diagnosis. I used to intern at the national multiple sclerosis society and most of the clients I dealt with had a consistent feeling of being tired, and not just tired from running errands etc., But tired after the most simple task. In don’t think any one (myself included) can really tell you how you are going to feel because everything is subjective. I’ve seen some people who to the naked eye I never knew were sick and then others who looked as if taking a single step resulted in a shooting pain.
I agree with other PP about seeing a neurologist not only to confirm your diagnosis but to also see what stage/type you have such as “primary progressive” etc. M.S. isn’t a death sentence but I echo sentiments after starting therapy/ treatment earlier. All the best OP.
Post # 7
I was diagnosed with MS about a year and a half ago (but started having symptoms about 4-5 years ago). My sister has been diagnosed with it for 12 years. Symptoms can be SO different for everyone (there are huge differences even just between my sister and me!) but fatigue is generally a big one for a lot of people. Personally, I get bad pain in my back (extreme achiness) and pain behind my eyes when I move them (and darkness/blurriness sometimes when it’s really bad). My sister gets sharp pains and achiness in her legs and arms. It’s just different for everyone because the nerve damage can impact whatever nerves it feels like damaging, and the pain can take on many different forms.
I will tell you this- there are some AWESOME medications out there now (even a couple in pill form!) that really do a LOT as far as slowing and/or stopping the progression of the disease. It can be a frustrating and disheartening disease at times, but if you DO end up being diagnosed, just know that most symptoms can be pretty manageable and you can still have a normal life 🙂 Right now, I’m in my 2nd trimester of pregnancy and working an accounting firm– busy season for us– so about 50-60 hours a week plus an hour-long commute each way on top of that. I am drained a lot of the time, but I can still function normally/pretty well 99% of the time– so I hope that’s an encouragement to you if you end up being diagnosed! It can be a scary disease but nowhere near as scary as it was several years ago… there have been leaps and bounds in medicine for MS.
Feel free to PM me if you have any questions 🙂
Post # 8
Have you been diagnosed? If not, are you being seen by a neurologist?
Word of warning: if you’re doing internet research, any collection of symptoms will throw up MS in the results. That’s because MS is an issue with the central nervous system, so it can manifest in all sorts of ways.
Pain really isn’t what is commonly associated with MS, especially as a presenting symptom. This is not to say that people with MS don’t deal with pain. We do. But it’s not something that will have a doctor zeroing in on MS if you’ve not already been diagnosed.
I’d just wait to see your doctor (with a list of things you’re concerned about). Anything else is jumping the gun a bit.
Like @kw948103: I also have MS and am also happy to have you PM me.