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POLYMYOSITIS and Sjogren's Syndrome

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diane03050
diane03050

I was diagnosis with Polymyositis in 1999. Now I have been diagnosis with Sjogren's Syndrome this year. I have has Sjogren's since December 2017. I am now twitching. Most of time it is really bad when I am tired. The Neuro Dr is ordering a Video EEG. He wants to see if the twitching and shaking from brain or involuntary muscles.  So I also have numbness in both legs to the knees. My legs are also very cold all the time. Even if I cover them .. When my legs are in water they turn purple,  Really weird. So my problem is My legs due to Reynaud's or Neuropathy.?  My GP Dr told me when you have a autoimmune Dis usually there is another.  Is anyone one have two?  How long will this Sjogren's last  My dryness in mouth really bad and eyes Yes I use drops and Biotin for mouth  My taste buds are gone.  Will they come back?  Anyone gone through all of this  autoimmune Dis?   Yes both are active So I do fall freq.  How long does Sogren's last Help!!  I know I have asked many questions. Oh yes My bloodwork neg  Dr's say that does happen often You can only order for the symptom mot the dis

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4 Replies

  • elisabeth38130
    elisabeth38130 diane03050

    Posted

    Hello Diana 

    "When my legs are in water they turn purple,  Really weird. So my problem is My legs due to Reynaud's or Neuropathy.?"

    Its interesting that you say this.  Firstly my name is Liz, I'm 63 (old old old) and I have got Sjogies/RA/and had 'Raynauds' and I do mean 'had' and also 'had'  terrible problems with depression. 

    Had Sjogies/RA (that I know of for about 15 years) prior to that problems with Raynauds that I was actually born with.  

    Anyway to cut long story short back in 1993 doctor decided to try me on 60mgs of seroxat (per day) my Raynauds  (which remember I have always had) literally cleared up over-night truly (seriously I was so happy you could not believe and am still thankful to the Seroxat) for that and so did my depression (still have my moments but now my 'depression is reactive' as opposed to constant for no reason). 

    I've been on the 60mgs of Seroxat now for 25 years and for me they have been a life-saver as I was coming to the end of my spirit. 

    Sjogies and RA are still problem but luckily I have only got myself to think about - don't have to work - when things are bad I just take a load of painkillers and wait until things get better again.  

    Would add that this is not an ad for Seroxat it worked for me. 

    You are welcome to show this note to your GP/consultant and if you need anymore info get in touch.

    I know how you are feeling with the Raynaulds though it used to make me so unhappy as it is so unattractive to look.

    Anyway kind regards and I hope that this is of some help.

    Love Liz and the five cats

    • diane03050
      diane03050 elisabeth38130

      Posted

      Thank You for letting me know this Liz. I am Diane 72yrs old Everything is hitting me at one time  I am sorry I didn't introduced myself in my paragraph.  I am so mad really at my body It is hard to walk on my own.  I have to walk with walker Or I fall I have Spondylosis My S1 is completely crush the nerve so my pain is bad too. I take Percocet for the pain but doesn't work I still have pain no matter how much I take I am afraid of them.  Thank you for your input I will look into med

  • Megheart
    Megheart diane03050

    Posted

    From what I can understand you are asking, Sjögren's Syndrome (if adequately diagnosed) will not go away but some symptoms associated with it over time may ebb and flow or disappear completely.

    For instance you mention that your muscle twitches (fasciculations) are troublesome at the moment. When I was first diagnosed I was having up to 30,000 fasciculations per day, yet now I scarcely get one twitch per week. So there is hope! The same goes for your taste buds. This symptom may remain a troublesome one but equally over time you may find it lessens and I hope it does for you.

    I also found that with my freezing/burning legs by wearing leg warmers in the colder months it prevented cool air flow hitting them which would make them feel even more freezing/burning. This has been an ongoing issue. 

    Regarding your eyes though, I must say I haven't heard of anyone with Sjögrens whose eyes have improved greatly. I hope I am wrong there! 😅 Are you using the viscous (thick) type of eye drops or the watery one? The more viscous the drop the longer it stays on the surface of the eye. How often are you doing your eye drops? Hopefully your ophthalmologist has advised you on this but the more frequently the better when your eyes are very dry. Also at night before sleep are you using an ointment? 

    It sounds like your doctor is quite understanding despite you not showing positive Sjögrens antibodies. It's horrible when all these things happen to us but try and relax a bit and in time hopefully things will become less muddied.

     

    • diane03050
      diane03050 Megheart

      Posted

      I have talked to you in diff forums TY I appreciate your hope and experiences.  Are you in medical field??? I am but knew nothing of this
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