Hello all. I was diagnosed in 2017 (I'm currently 47) with mild symptoms and I've been very lucky to not have it progress quickly. My brain MRIs show just a couple lesions and it was difficult getting a diagnosis until my spinal tap results were consistent with MS. My biggest issue is fatigue. Recently though, I've been diagnosed with Gastroparesis, I've been having a hard time holding back BMs, and for the last 6 months or so I've had decreased sensation during sex. I've had 1 fall back in November down the stairs and urinated on myself when I fell. My last brain MRI was in November and saw no change. I know I need to see my Neuro, I'm just scared that this is progression. Would these symptoms be due to spinal lesions lower down and that's why I wouldn't have known? We've only been looking at the brain and c-spine since my initial diagnosis.
New Symptoms...: Hello all. I was... - My MSAA Community
New Symptoms...
No one here can give you an answer re whether your "new" symptoms are due to MS lesions in your spine or brain - and as you yourself have noted, you need to see your neuro - and another MRI may be required. Putting this off won't necessarily make your symptoms go away and while you haven't said what MS meds your are one (or if you are on any at all), if you need to either change (or start) meds then it isn't going to happen while you do nothing. Sorry to be so blunt, but ignorance is not bliss where MS is concerned and if you don't know what's going on then you can't do anything to deal with it, and if something more is happening with your MS the longer you leave dealing with it the more likelihood of further damage/ disability.
I am going to the Neurologist. I think I was trying to ask what others experience with their symptoms were with spinal lesions and if they aligned with what I was describing my yes, "new" symptoms were.. It was weighing heavily on my mind and it is the weekend. I'm not expecting a medical diagnosis, just a friendly opinion.
Apologies - As you did not say that you had an appointment coming up any time soon I interpreted your comment of "I know I need to see my Neuro" as meaning that you were avoiding making an appointment to see your neuro.
The problem with comparing symptoms with those that other people experience is that lesions in the same place in two different people do not necessarily cause the same symptoms in those people, although there can be some commonality across the broader MS population. Additionally, some people can have MRIs which "light up like a Christmas tree" but may have few symptoms and little or no disability, while others may have the opposite situation i.e. hardly any lesions visible on MRI but lots of symptoms and/or disability.
I wouldn't worry too much about random incidents, but any time you have a new symptom that lasts for more than 24 hours and can't be attributed to illness, too much activity, etc then you need to call your neuro. How often are you getting the MRI's?
I was recently diagnosed with gastroparesis, too, and it's a major PIA, isn't it? 🤪
Hey there, hazelbazel. I'm sorry to hear about your new symptoms. I just hate how scary it is when new stuff happens and you don't know what it means. When that happens, my brain immediately goes into overdrive thinking and worrying about what it means. I don't know either, and of course you're right that you need to see your neurologist. I would also think about seeing a urogyecologist, if you can find one. They can check out anything in the pelvic area and determine if you could possibly benefit from pelvic floor physical therapy, medication, or possibly botox injections for incontinence. I hope that you can get some answers, and that you're not progressing.
Hi hazelbazel, and welcome to the group. Sorry you are dealing with all these symptoms. Of course, it's always tricky to determine if symptoms are M.S. related. CatsandCars had a good suggestion about seeing a urogyn for an assessment and to see if PT might help with some of it. When you see your Neuro, you might ask about getting an MRI of your T-Spine, just to have a look. You might be correct that there are lesions on your t-spine that might explain some of your symptoms. There is so much overlap with M.S., it's hard to know what to blame certain things on. Your best bet is a visit with your Neuro to discuss all these recent symptoms and get their opinion on next steps. Hope you get some answers soon.
I understand that MRIs can only see the gray matter of the brain and not the white matter (or vice versa) so a MRI is not the full story.
I had severe gatroparesis. Had a hard time getting diagnosed esp when overload with fiber. Gi dr finally diagnosed with sibo.. neuros thought I was crazy.
Ms can affect vagus nerve & can they see, who knows prbably not vagus long.? also had thyroid issue which slowed down gut peristaltic.
Anyway experimented on self did some diet modifications & life goes on. Not perfect but with some understanding how complex we are.
Prayers for your journey
Good luck at your neurologist appointment
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