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Possible PPMS

Hey,

I’ve been suffering from gastrointestinal and urinary (urgency, on and off) problems for the last two-three years, been diagnosed with microscopic colitis and fatigue (on and off) on on-and off basis for the past couple of years. My right leg has been weaker as well (attributed that to diagnosed flat foot). My doctors have found a couple of small (4mm, inactive) lesions in my brain recently, LP was clear, so doctors recommended a follow up in six months. After getting the results and browsing the web I saw what it could mean. After a couple of days, my right side went weaker and right side of my face feels funny (harder to smile) though its not visible. No sensory changes. It has been going on for the last two months. I’m just panicking that I have PPMS, because it didn’t remit at all during that time. I’m stressed out (as you might see). Looking for some opinions/reassurance when it comes to PPMS (worried that it’s not RRMS). Had few bouts of extreme fatigue for - usually - one day in the last four-five years. How would you approach the issue, appreciate any comments. (sorry, for the rambling). I’m 23, male.

Hi

First of all, it might not be MS. As you’ve had a clear LP, there is a possibility that the lesions aren’t MS type lesions (the right kind or in the right place).

Secondly, supposing it is MS, two months isn’t that long for a relapse to remit. It can take so long and be so slow that you don’t realise the symptom has got better until one day weeks or months later, you suddenly realise that the feeling has changed. Other times, a relapse doesn’t remit completely. Or even much at all. I had relapsing remitting MS for at least about 18 years and thought it had become progressive time and time again because relapses were so slow to remit, or I suffered relapse symptoms that just never did improve.

So I imagine you now have a few months till your next neurology appointment, see if you can get it brought forward by phoning your neurologists secretary and explaining what’s been going on for you.

Meanwhile, can I suggest that you stop googling MS. Dr Google is wrong at least as often as he’s right, if he had an M.D., he’d be struck off for bad doctoring. Feel free to keep asking questions on this forum, either this board, or the newly/un diagnosed board. Or of course read information about MS from this site or the MS Trust. Just don’t keep believing that you have MS of any variety and panic.

All the best

Sue

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Hey,

Even if it is MS, it may still be RRMS as i have been diagnosed RRMS but have had symptoms throughout my life which have been getting worse over the years but I am still pretty functional. I have altered sensation in both arms (right worse) and reduced function/spasticity in my right hand which has improved from my initial relapse but I still have difficulty with daily function and nerve pain. I have a range of other symptoms like severe fatigue, brain fog, bladder issues and muscle spasms which are worse now than say 3 years + ago with no relapse or break from those symptoms but I am still considered to have RRMS.

Diagnosis is a pain for some, it took me 6 years going back and forward with numbness in my right arm, but it took me to lose some hand function and numbness on my whole right side for anything to be looked into, and that’s only as they were concerned about stroke or something similar. I found that because I had a history of depression and anxiety, each time I queried MS I was told its more likely my mental health and no further investigations happened. One idea is that you could keep a log of symptoms, and even log each time you attend the GP and write the reason and symptoms discussed as when seeing a GP they’re unlikely to go through your last 5-10 appt history notes. This way you can show that you are experiencing a pattern of a number of different symptoms throughout the year/s and that because it is a repeated pattern, you believe them to be connected.

I am female, and 28; diagnosed in 2016 and sadly my relapse that led to diagnosis occurred one week before I started uni as a seconded mental health nursing student and due to my reduced hand function, I had to leave uni when I was due to go out on placements, and now the funding is no longer available for me to go back. As much as people will say don’t look too much into ms, I was convinced I had it from childhood and you know your own body so don’t give up because life is short and you want to get these questions answered so you can enjoy your life.

Sorry for the long message, i wish you the best and hope that you get all the answers about what’s going on for you.

Best wishes, Sarah

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Hi guys,

An update on my situation - after I got my results of spine MRI (no lesions) and got another MRI (6 months after the first one, no changes), some concerning blood test results, and my new symptoms, the doctor started to investigate more. So, after recently spending 2 weeks in a hospital, I was diagnosed with Wilson’s Disease. I’ve started the chelation treatment (it’s also a life-long condition), and am happy that they didn’t give me any DMT’s, because that could be fatal in my situation.

So, for anyone else in Limbo, as much as I hated my time there, it can be useful. Thank you for answers and private messages, really appreciate that.

Take care, lots of health!

Hi

Thank you so much for telling us your diagnosis. I’m sorry it’s a bad one (not that MS is necessarily a good thing to be diagnosed with). Hopefully your treatment will help with your symptoms and you’ll start to feel better over time.

I wish you the very best of luck.

Sue