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Recently diagnosed with MS after 15 years

Posted , 7 users are following.

sonia1215
sonia1215

I've had flares off and on but didn't get dx til May. Woke up around 3am and one of the fingers on my right hand is incredibly painful and can't move it. It's been locking up for past few months and I have to use the other hand to open it up. Is this a part of this disease?

0 likes, 16 replies

16 Replies

  • emma53501
    emma53501 sonia1215

    Posted

    Poor you sorry to hear that.

    It may be a nerve inflammation issue. 

    I haven't had this particular problem or heard about it,but as you know we are all different.

    Try looking on the MS societies website if you haven't already,

     

    • sonia1215
      sonia1215 emma53501

      Posted

      Thanks Emma I will look on that site. Already put in call to dr but it's Friday.
  • cupcake28
    cupcake28 sonia1215

    Posted

    If you don't mind me asking how come it took you so long to be diagnosed?had you not had an MRI or lumber in that whole time?
  • sonia1215
    sonia1215

    Posted

    It took so long to get a proper due to insurance and faulty drs. The dr that had the first MRI done on my brain said it was MS. Then I changed jobs and couldn't see him any longer. The next quacks I went to didn't look into it further. In the mean time I was dx with colorectal cancer and had two strokes and spent a week on life support but my insurance changed again and I was able to see the first dr that I loved, respected and worked for over the years. Now here I am.
    • sonia1215
      sonia1215

      Posted

      I start Avonex Friday. Anyone know any info about it. I've read up on it but word of mouth and experience is better.
    • judy43125
      judy43125 sonia1215

      Posted

      Hi Sonia I have been on avonex about 18 months,I usually take mine in the evening because I get stiff and sore from injection and would rather just sleep through it, I take tylenol and advil for any discomfort. Can't tell if the drug works but in 18 months not a single flare up,so that is very positive for me,I refuse to let ms define me and push myself all the time. The only thing I really deal with is fatigue and it can be bad,good luck it is scary at first
    • sonia1215
      sonia1215 judy43125

      Posted

      Hello, Judy. It was bad achy, fever etc but I've been through worse. I have damage to my right hand which is bad because I'm right handed. I'm going to get through this. I got through colorectal cancer so this will be ok too. I walk every day. My gait is off though but I'm not letting it stop me. I can't my 27 year old daughter has juvenile rheumatoid arthritis dx at 7. Her drd aid she'd be in a wheelchair by 13. She's not because I didn't cripple her mind. So now I have to practice what I practice what I preached. She takes a Humira shot weekly so I gave her strength and I'll dig up mine. Thank you once again.
  • wendy80842
    wendy80842 sonia1215

    Posted

    hi sonia,

    it sounds like you've really been 'through the mill', healthwise. i'm glad that you're back with a doctor that you trust, i think that it's half the battle to do so. it took me a while to get to neurology, and a doctor i like and trust.

    i find that the UK MS society website is great for getting info about treatments/experiences/meds etc. you can post on their forum to get a wealth of feedback from others with MS. there regularly  are posters from other countries. i haven't tried other nations MS society sites, they could well be the same.

  • sonia1215
    sonia1215

    Posted

    Started Avonex today. Feel kinda yucky sleepy and not myself. Right hand has permanent damage. I can't move my middle finger and hurts really bad. Fever chills. Bummed out a little because I'm righthanded and can't write. Luckily this med may help to prevent anymore damage I hope. Looking for good results because walking is unbalanced. Going to start yoga too.
  • cal245
    cal245 sonia1215

    Posted

     at that point.nd hospital for 2/3 yearsHi Sonia

    When I was diagnosed 10 years ago I was told that I had already had it for about 16 years... my neurologist had been through my medical records.  I had only been going backwards and forwards to drs and hospital for 2/3 years at that point/  Up until then the MS hadn't really impinged on my life too much, at least not on a regular basis - it had been very intermittent. (rrms)  Now I am secondary progressive,

    • sonia1215
      sonia1215 cal245

      Posted

      I see that as a big problem. Diagnosis is hard. My brain MRI was done 15 years ago. Since that time I've had repetitive issues, drs even dx me with stroke x2. The sad part is just monrhs after dx my finger has gone on a track of its own. Painful, unable to bend, etc. Makes one wonder.
    • judy43125
      judy43125 sonia1215

      Posted

      I read people's stories and am so thankful so thankful for all the Dr's I have when I was diagnosed my primary dr pushed me into specialist right away and he then pushed for all tests I was originally given my dx over a 2-3 month time frame and Dr's are very proactive in my treatment,but for al of you in UK my most awesome neuro is moving to UK in next year or so......lol
    • wendy80842
      wendy80842 judy43125

      Posted

      it's worth noting, that in the uk we don't end up being ripped off for thousands (by 'proactive' medics), to pad the finances of lots of different specialists, we also don't have a huge percentage of our population going without any health care cover. here, if someone suddenly finds themselves ill or injured, they're just treated, they don't find their finances/insurance checked first... what happens to the millions of people,  even in other 1st world countries, who DON'T have the necessary cover.

      in 2012, i unexpectedly end up up in hospital, after a subarachnoid haemorrhage, i was taken to a fabulous hospital, had various different treatments, including  all diagnostics, trepanning (burr holes), and brain surgery, all on the NHS, and all without any cost to me (a penniles disabled person). i went on to be in hospital for over 3 months, having lots of different tests and ongoing care/therapies.

      all first world countries are incredibly lucky to enjoy the best health care in the world, but i feel so fortunate to be here in the UK, under the ongoing ministrations of our wonderful national health service.

    • sonia1215
      sonia1215 judy43125

      Posted

      It's great you have that coverage. My issue was not duecto insurance though. It's the fact that MS is a hard disease to diagnose.
    • wendy80842
      wendy80842 sonia1215

      Posted

      my last response was to a post from judy43125. i couldn't agree more with you sonia, MS is the sneakiest of conditions. so many...too many of us are left in limbo for such a long time. unfortunately, because relapsing/remitting MS is the first stage for many of us, we can find ourselves being given tests when we're in remission and where some recovery has taken place, we can get false negative results. there's also the issue that there are different types of MRI machines, gving different standards of imaging. for me, it took one negative set of MRI's, followed by one inconclusive result, from a different, better MRI machine, until, finally, i was tested in the right type of machine and this showed fairly pronounced lesions over about a third of my cervical spinal cord. 

      i was lucky that the whole process was over 'only' one year. that was hard enough, i can't imagine what you've had to deal with.

    • judy43125
      judy43125 wendy80842

      Posted

      Wendy80842 I did not mean to offend or come off ignorant. I was simply saying that I was very lucky to get my diagnosis as quick as I did,I have lesions on my brain,around c5-6 and t10 area of my spine,as for a pro active dr.I went a totally natural route for many years but things started to happen and he gave me the opting and I chose Avonex.living in Canada we also have good medical, my employer pays it and it is set up in such a way that I can get almost any treatment from anywhere, for this I am very greatfull, Dr's seem to have different opinions about ms,I have a gf with ms and her dr feels there is nothing they can do to help do she gets nothing and now her MS is progressing, I was not willing to take that chance. And lastly my comment about my dr was because I think he is the best he is from the UK, and MS is his specialty,he has moved numerous times and I continue to follow him,when he said he wants to go back overseas I Said well is where I drop the line. And I eat very healthy. I am on a raw diet and I think this has helped me. So if anyone was offended I do apologize.
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