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  • cherry_blossom
    Hi all,

    Sorry for the super long post.

    I'm 29 and for about the past 7 years I've noticed a steady progression of episodic symptoms. I think the first thing I really noticed was my eyes. I'd get episodes of stabbing eye pain, or pressure in my eyes which would make my vision more blurry. It could last for days or weeks and then it would go away and my vision would go back to normal. Since then I've had episodes where my shoulders have been cramped for weeks or months, with treatment not helping. My lower back has cramped for weeks or months (sometimes with it spasming to the point of being able to see/feel it). My feet often cramp when I do particular things and it will last for hours at a time, and I go through episodes where this will happen on and off for a period of days or weeks. I get episodes of urinary urgency and frequency, lasting for days or weeks, and on the last 2 episodes have wet myself more than once, so I now have to wear pads when these epsidoes happen. I've had episodes starting more recently where I seem to be losing a degree of bowel control which will last a few days then go away, and I've had a loss of bowel function twice now. I get periods of days or weeks where I'll numbness or tingling on my legs. Epsiodes of fatigue where moving just feels like wading through thick treacle with lead on my limbs, and even speaking can be exhausting, all I want to do is lie down. And recently this has progressed that when I have this I start to lose my balance and fall into walls and door frames. Episodes of struggling to find words and my speech not being great. And probably more stuff I just can't think of right now.

    I always put these down to one thing or another, I have a bad back, poor circulation, an eye condition, bad bladder control etc. It was only towards the end of last year I started to realise it might be something else. At the time I was suffering from excruciating eye pain which lasted for a few months, and would be painful to the point of me feeling sick and being unable to eat. I also felt that my vision was worse and had to go back to wearing my glasses. I went to the optician but they didn't say much except it could be inflammation and that it should go away. When I googled my eye pain it came up with optic neuritus, and then MS. Suddenly it was like the symptoms I'd had for years made sense and there was a possible answer to why I'd been getting them, why they came and went, and why they steadily seemed to be getting worse.

    However, even though I came up with the thought it could be MS last year, and since then I've had episodes of worsening symptoms, I still haven't been to see my doctor. I suppose that after a previous bad experience I'm afraid they'll just shrug it off and tell me there's nothing wrong. Afraid that maybe I'm just trying to come up with a label that may not fit me. And possibly even more, afraid of the potential consequences for my career, as a diagnosis may mean the end of being able to do my current job (due to legal requirements of what I do), knowing I can't afford to lose my job.

    I guess what I'm looking for is whether you guys think what I've described could be MS, or am I just being silly? And if so a bit of encouragement to finally make an appointment and find out once and for all.
  • golgotha
    Sorry to hear about your problems.

    Sorry for the super long post.


    Don't be sorry. Just remember that in text on computers or MOTSCOs (aka "cell phones") that large paragraphs can seem like a "wall of text" and be hard to read. Doubly so for people with MS.

    as a diagnosis may mean the end of being able to do my current job (due to legal requirements of what I do), knowing I can't afford to lose my job.


    Obviously, I don't know what the job or legal requirements are, but let's assume there is some logic to those "legal requirements."

    If that's the case, aren't you being foolish for not finding out?

    In the case of MS, if it is MS, then your best course of action is to get on a DMD (disease modifiying drug) as soon as possible. Thus, not being diagnosed would be not wise IMO.

    is whether you guys think what I've described could be MS, or am I just being silly?


    Lots of symptoms could be MS. But there are a couple of health issues that can mimic MS too.

    The bottom line is that you won't know unless you see a doctor, preferably a neurologist who has some experience with MS. If this job is worth having/keeping, then you should have decent health insurance and perhaps (?) disability insurance too.

    Either way, purposely not seeking a doctor when you're having issues like you are is not a smart move IMO.
  • maria1
    For some of us, me included, we need to take small bites of reality before we are ready for the truth, the mind has its own timetable for facing reality, we know something is wrong but we explain it away as temporary. And when we are ready we jump into the water and face the waves head on. When you are ready for the truth you will do something about it, and not before.
  • ErinNicole
    There are lots of diseases that are similar to MS and easier to diagnose.

    I’ve had symptoms for at least a decade, but always wrote them off until an optometrist saw optic neuritis in my eye over 2 years ago. 

    There are many test need to be performed to rule out other possibilities and some of them I had to wait on until my third son was born.

    So it took over two years for me to be diagnosed. During that time I went from regularly running 6 miles, daily high intensity workouts, swimming, skating and riding bikes with my kids to barely being able to walk, regularly falling, using a chair to get up on down from the ground to sit with my kids, not being able to use stairs and almost always using a cane.

    Im not trying to scare you, but if you think MS is a possibility it’s not worth waiting. The sooner you can start disease modifying treatment to stop or slow down the progression of the disease, the better. Also the sooner you can start physical therapy the better. Even though I lost a lot of abilities in those 2 years, in the matter of months things have drastically improved by knowing how to move forward and having the Right tools 
    As for employment there are free resources that can help you find a job within your skill set. Best of luck!
  • cherry_blossom
    Well I finally went to the doctor today. She did a few tests including reflex tests (intermittent or reduced/absent reflexes in arms and legs) which is said was normal (which I know isn't). She said power was normal in all limbs though I struggled with the power tests and my limbs shook when I was trying to resist. Babinski's I had an absent reflex. Finger to nose I could do but was slow and shakey. Heel-to-toe I was awful and just kept severely wobbling and falling (I probably did worse than a drunk person and I know this used to be normal). However, she said as my results were normal (again I know they weren't as I conduct these tests myself). As a result of not having hyperreflexes she said she thinks it could be ME and not MS.

    I've done a bit more research since I got home and on some sites it says MS shows hyperreflexes and others it says reduced or absent reflexes. Some say Babinski's would be hyperreflexive, some say a normal reflex should be to curl your toes (mine didn't move). Most say ataxia can be a sign and since getting home I've also tried Romberg's which I just wobbled and had to grab onto things with (I used to be fine with this).

    So now I know I have abnormal reflexes and ataxia, but have been told there's no issues so I'm even more confused than before. As for ME, although I fit some of the symptoms it doesn't really seem to fit what I have anywhere near as well. She did look at my bloods from the other month and they were all fine, but she didn't refer me on to anyone else, or suggest anything else, so now I'm kind of back to square one where I don't really have any answers.

    I wish I'd asked for further / a more indepth assessment but I didn't think at the time, and knowing I have ataxia and other issues just worries me more.
  • maria1
    So, call up and ask for more tests or better testing, or, find another doctor. If she thinks it is you and you disagree, find a doc you can trust. It is your health not hers.
  • ErinNicole
    See about getting a second opinion. 
  • cecaracci0108
    I have had eye pain pressure for years, a past retinal detachment and they only told me I had inflammation, last year im sure I had optic neuritis but was never told that, then the falls and I went totally numb and pin and needles in my legs, and couldnt feel the difference between sharp and dull objects, I went to see my Dr and then was sent to a neuro, blood work was completely fine, no lupus, lyme, EMG/Nerve conductive study was fine, So finally the MRIs and Spinal tap and I had Brain, Cspine and Thorasic lesions and a high number Obands in spinal fluid but I have good reflexes still and I walk pretty well, I still work full time,  but I fall if I walk one foot infront on the other and I do get dizzy. Ive had steroid infusions so my only problem at the moment is numbness to my right hand. So to you, I would say everyone developes different symptoms and some have it worse than others but It is worth looking into and getting the help now.