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Still Sjogren's? New Symptoms Worrying Me

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jackiegirl
jackiegirl

Hi guys!

I'm new to this forum & hoping someone might have experienced symptoms like I have recently or might have some helpful tips/answers as I'm not getting much out of my doctors at the moment & it's leaving me feeling pretty scared.

To give you an overview--I'm 30 & have had Sjogren's Syndrome for 5 years now. Around 6 years ago I started having extreme fatigue & found I have an underactive thyroid & then my blood work & symptoms led my previous rheumatologist in the U.S. to diagnose me with Sjogren's Syndrome. At one point she thought I might also have Rheumatoid Arthritis (this was probably encouraged by the fact that my paternal Grandmother has terrible RA), but over the course of the few years my rheumatologist decided it was Sjogren's only. My main symptoms the first 5 years were extreme fatigue, very dry eyes/dry mouth/dry vagina & sometimes feelings of weakness in limbs. I felt like crap & exhausted easily most of the time but I never had any significant noteworthy pain.

I now live in Australia & haven't seen that rheumatologist in a little over a year. A few weeks after seeing that rheumatologist while I was visiting home I returned to Australia & started having strange new symptoms. The trip home was fun but exhausting & the long travel back to Australia seemed to set off a "flare up" of something--muscle spasms/twitches all over my body, random pains, headaches & foggy brain, & lots of tingling (tingling primarily in lower legs). My GP here in Australia was worried I have MS so an MRI was done on my brain & spine. There were two lesions found in my brain but not in the area that MS generally affects & not in what is considered the "danger zone" for lesions. My spine showed 3 points of inflammation but overall the MRI place, my GP and a neurologist all said they did not think it was MS. They didn't really provide any alternative answer though, just that it wasn't MS & not to worry. After several weeks of rest & taking it easy I started to feel better. My muscle spasms never completely went away but they severely declined & no longer worried me as there were so few compared to before.

Fast forward to a few months ago (approx 8-9 months after previous flareup ended), & the same type of symptoms came back but with a few new ones too. The new ones are stabbing pains that occur randomly all over my body (these stabbing pains feel like they occur in both my muscles & bones). A few areas seem to be more frequent then others but the pains are also pretty random. Also an alarming new symptom is unexplained bruising in my lower legs that has been there for over 3 months now. The bruising gets lighter when I'm sitting down & darker after walking/exercising but never completely goes away. The "bruised" area feels sore & sort of numb at the same time. Other symptoms that have come back are muscle spasms/twitching all over the body (even in my nose which I didn't think was possible?), chest pains, difficulty concentrating with headaches brought on the moment I feel the least bit stressed or where I have to concentrate, & my lower legs constantly feel strange (a mix of tingly/tight as if I need to stretch the muscles even if I haven't used them).. My arms between my elbows & wrists feel this same way but not as bad as my legs. And I've noticed that when my arms are lower not elevated they feel more normal than when I'm driving & my arms are raised. My arms feel the most uncomfortable & strange when I'm driving & have them raised to the steering wheel. Overall i've noticed that my symptoms get significantly worse when I feel stressed at all. They never completely go away but the symptoms ease up significantly when I'm home on the weekends than when I'm at work.

When these symptoms came back a few months ago I assumed it was my Sjogren's having a flareup so I went to a new rheumatologist here in Australia, since I figured it was time I started seeing a local rheumatologist where I now live instead of only visiting one during my home visits. Anyway, he did blook work & all of my blood work came back completely normal as a non-autoimmune person would have. This made this new rheumatologist say he thinks I actually have a neurological problem & don't have Sjogren's at all since it's not showing up in my bloodwork. He even advised I stop taking the Plaquenil I've been on for the past 5 years! This upset me since I've had such dry eyes/mouth/vagina for over 5 years & I've read that Sjogren's can sometimes "hide" from bloodwork? Now I have to request reports from my previous rheumatologist in the U.S. & basically convince the rheumy here that I do have Sjogren's. Obviously I would love to not have any health issues, but it was upsetting he would so quickly say that I don't have any rheumy issues & that it's all neurological.

I think I do need to see a neurologist, but unfortunately it seems people often have to wait several months to get in with a neuro as a new patient & I refuse to go back to the previous neuro as she made it quite clear she thought I was silly for being worried it was MS without the brain lesions in the "danger zone" area. I'm feeling helpless because my new rheumy says it's all neurological but then the neurologist I previously went to said it was all rheumatology related. I would very much appreciate any insight or people who have dealt with symptoms similar to mine as I helplessly wait until I can get an appointment with a new neurologist. The main symptoms that worry me are the muscle spasms/twitching, stabbing pains & headaches/blurry vision when trying to concentrate.

Apologies if I've bored you all to sleep with my long ramble! I'm just feeling scared & helpless at the moment, & I'll admit I'm really hoping that this is all still related to Sjogren's & not something more scary like MS.

Thank you for listening!!smile

1 like, 28 replies

28 Replies

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  • jackiegirl
    jackiegirl

    Posted

    Oh & I should add the bruising in my lower legs is also worrying me since it's been there for over 3 months.. I can normally feel exactly where it is too. i'll think "ouch" & then look down & exactly where the pain is there's the light brownish colour bruise. Before this new symptom I rarely bruised ever.
    • morelia100
      morelia100 jackiegirl

      Posted

      Hi Jackie,

      I remember feeling scared and helpless when I was first diagnosed with Sjogrens. It's been over 2 years now and I feel like I have improved significantly. I cannot say that I have experienced all the same symptoms as you, but I have had some (dry eyes, dry mouth, RA, stomach issues, fatigue, and some others). The very best advise I can offer anyone is to let you know that there is a way to heal through the food you eat. I have had very good results. This is something you can do in conjunction with medications, if you should do choose to do so, and eventually taper off. Maybe you know, but if you don't, I wanted to mention it. There are no side effects to eating healthy and changing my diet has helped reduce or get rid of most of my symptoms. It's been amazing to learn that food can have such an effect. So there is "hope" is what I'm trying to say. Hang in there--i think you are following a good path in seeking professional help. I saw both a rheumatologist and I currently see a naturopath. Best of luck! Not an easy path--i know.

    • jackiegirl
      jackiegirl morelia100

      Posted

      Thank you very much for your kind reply & tip about making sure I eat as healthy as possible. Did you give up dairy or any certain food group or do you just try to eat as much "real food" & unprocessed stuff as possible? I'm pretty good about eating lots of fruit & veggies but I could definitely reduce my wine intake & also avoid going out to eat which I know would be full of processed foods. 

      I am still hopeful my current symptoms are all related to Sjogren's & not MS, but my GP has me more worried after my appointment today because apparently what I refer to as "bruising" is actually discolouration from nerve damage that is not normally found in neuropathy. Also, they don't think the weakness/tingly/numbness I'm experiencing in my lower legs & arms could be from Sjogren's/neuropathy & they seem pretty convinced it's neurological/MS related. Fingers crossed it's not though & I've been able to schedule an MRI for next week that will hopefully lead to ruling out the dreaded MS. I've definitely had the Sjogren's dryness for over 5 years now so it would be pretty unlucky to have both.

      Thank you very much for listening to my rambles... I feel terrible for my poor husband who has been having to listen to all of my worries & it's been a little comforting to find this forum. Best of luck to you & I hope you continue to feel well from the foods you eat smile

    • morelia100
      morelia100 jackiegirl

      Posted

      Hi Jackie,

      I haven't given up any food entirely, but I have cut back drastically (meaning I only eat them on rare ocassions) on certain food groups including diary.  During the course of testing my blood, I was able to find out that I have very high sensitivities to Dairy, Wheat, eggs, white sugar, corn, soy (like most people with autoimmune disease) and a quite a few other miscellaneous things like coffee beans and pineapple for example.  Almost all vegetables and fruits were fine for me to eat and also meats and plenty of other things.  I now strongly believe that what had impacted my "Rheumatoid arthritis symptoms" the most, was probably the white sugar and the dairy.  I was quite amazed at how the pain subsided once I cut out all these things 100%.  I only did this for about 3 months and it was not easy.  I now try to keep real foods, like you mentioned earlier, in my home and no junk food.  I mainly drink water, coconut water, herbal tea and almond milk.  Although I do allow myself a cheat day about once a week where I can eat anything.  It really does sound like you have problems with your autoimmune system like Sally was saying.  We recently discovered in my own family that many of us have autoimmune disease that we didn't realize was connected until I started doing some research.  I have family members with Vitiligo, IBS, Fibromyalgia, Myasthenia gravis, diabetes and we didn't realized they all fall under autoimmune disease.  This disease can be so unique in each person because of your biology and external factors that may be in your environment.  There is an overwhelming amount of information out there -- but I think that finding a professional who can help you sort it all out is so helpful.  The only reason I stay away from the medications is because they are also chemicals, which are not natural for your body and although they may alleviate symptoms and I definitely think there is a place and use for them (and I respect other people's choice to use them) -- my understanding is that long term it may not be as good as using natural remedies which have no side effects.  A good solution is that people will remain on the medication as long as it takes to transition to a healthier diet until there is no need for the meds anymore. Sometimes, as is often the case of some thyroid diseases, you may need to stay on medication long-term.  There are also other factors to consider -- some people have a parasite, or some severe illness or lots of stress, exposure to high levels of toxins--and all these things can trigger or aggravate atutimmune disease.  Maybe some more areas for your doctors to help you explore on your path to recovery.  I really wish I had some very simple and easy solution, but that's all I know right now.  I hesitate to talk too much because I don't want to cause you any undue stress, so I will tell you to look at the big picture and realize that almost all of us are being exposed to the same types of things-- it will be okay -- just take it one step at a time and celebrate each symptom that diminishes and each thing you are able to do to restore your health.  It does not need to be all done at once. Hang in there smile

    • Ransom
      Ransom morelia100

      Posted

      How did you come up with a diet to help? I have done some research and talked some to my doctor and I haven’t gotten very far. 
    • christine26761
      christine26761 Ransom

      Posted

      Try PALEO it’s low carb high fat...fat is good for you it’s the sugar that you need to omit from any diet, it’s amazing for our condution and the weight loss is a bonus if you need to lose weight...no bread, pasta, rice. Potato’s etc, but there is plenty to replace them, I also make Kombucha-fermented drink. Like fizzy wine.and kefir, it’s all awesome the more you look into it the better it is, I eat coconut, oil, sweetener, vinegar, like a worstershire sauce, everything you can think of is made of coconut too and the recipes are endless,  do yourself a favour and google it, I have Paleo Mum on Facebook..be blessed and have a lovely day Rabsom😍?p😍

    • Ransom
      Ransom christine26761

      Posted

      Thank you so much! I’m going to try it out. It will be tough all that you said to omit are my favorite, but I have heard diet really helps. Thank you for the advice! I’m excited to try something new. 
  • sally83545
    sally83545 jackiegirl

    Edited

    Hi Jackiegirl,

    Sorry to hear you have been feeling bad. I have experienced a lot of the same symptoms this is what I learned. I don't know if you're aware of the info available on the Sjogrens Foundation Website but many of the symptoms other than dryness are listed there. I was told the tingling etc. was Peripheral Neuropathy (research) and as my Plaquenil kicked in it went away but does come back now and then with flares. It is my understanding easy bruising and bleeding gums are common in Auto-immune disease. Neurology is having to do with the nerves and nervous system it involves the spinal cord and the brain but doesn't necessarily mean there is something wrong with your brain. Many times with AI disease there is an accompanying disorder. Mine is Lupus Arthritis, before I was diagnosed and put on Methotrexate I had th kind of pains you are describing. It may not be RA but I found out there are over 100 different types of Arthritis. (who knew?)

    I am no expert but it sure sounds to me your issues are Auto-immune related.

    AI changes and progresses differently in each person. Don't panic or let it get the best of you. I think research on SS might explain some of your new issues. Keep taking your meds and tracking your symptoms, in time you will get to the bottom of this...breath deep jackiegirl... you can do this. 

    Feel better, 

    Sally

    • jackiegirl
      jackiegirl sally83545

      Posted

      Hi Sally, 

      Thank you so much for your reply. You seem to be more knowledgeable about Sjogren's than I am... One other alarming symptom I didn't mention before was that it seems as if part of my muscle on the outside of my lower leg is suddenly missing? Until recently I practiced yoga which meant I spent a lot of time looking at my legs during the stretches. I showed it to my GP this morning & he said it looks as if the one part of the muscle has wasted away but it's strange because the surrounding muscles seem fine visually & I still have enough strength to walk a significant ways or even run a little ways (maybe up to half a kilometre?)... it almost looks like someone took a bite out of my muscle on the side of my lower leg leaving it with an indent, so strange... have you ever heard of this happening from neuropathy issues? I didn't even think this was a symptom of MS but I'm trying to avoid looking up MS things online for now.

      My GP today ordered an MRI of my brain & full spine for next week so hopefully it's not too much longer before I have some answers. Have you experienced weakness in your lower legs & arms before? And did you ever have discolouring from what appears to be from nerve damage? None of my blood work is currently showing any abnormalities with rheumatology issues (even though previous blood work did) so it's making my GPs keep pointing to neurological. I'm hoping & praying it's still just neuropathy from Sjogren's & not MS or something similar.

      Thank you again for your kind words & listening to my ramble!!

  • sally83545
    sally83545 jackiegirl

    Posted

    Hi Jackie ,

    Sorry it took so long to get back to you. Muscle weakness is one of the first things I noticed. I had difficulty holding my arms up to blow dry my hair and walking was exhausting. You can read on different sites symptoms of Sjogrens and Lupus and see if they seem similar. Make sure you have an ANA blood test (Anti-nuclear Antibody) (research to know more) This is for Auto-immune also mention SSA and SSB these are blood test that finally gave me some answers particularly the ANA.  How was your SS diagnosed? Do you know if you had these tests already?I noticed changes in my legs at times. I know we have lymph nodes through out our body. Could it be possible that you have swollen nodes in your leg that could give the appearence of a dent ir puckering? Research lymph node locations on the body and see where they are located.(That's what I would do) Swollen nodes are common in Sjogrens and Lupus. I also had weakness and numbness in my legs and arms, back, neck and shoulder pain and constant headaches before my diagnosis of Lupus Arthritis. There was an article this month in Arthritis Magazine about neck issues being the reason for headaches. For the first time in 10 years I am not having headaches everyday since being correctly diagnosed. I went through all the tests also ,consider it a process of elimination, you will likely find out what it is not before you find out what it is. I tried to keep all the results in a folder, you can ask for copies of your results. I also kept a list of the meds I tried and what dosage. (it's like a project or a quest for answers). Try to take it one day at a time, nurture yourself and remember stress causes flares. Educate yourself so you can advocate for yourself.

    Feel better,

    Sally

    • jackiegirl
      jackiegirl sally83545

      Posted

      Thank you very much for your thoughtful reply. I'm also very happy for you that you are no longer having headaches and you have improved symptoms.

      Unfortunately I don't think it's swollen lymph nodes causing the muscle wasting issue in my leg. I went to a clinic today (still waiting around for my neurologist appointment) & showed my leg to two nurses who were both very concerned about the dent in my leg from what looks like muscle wasting. They did a scratch test to test sensations and the sensation was less where the muscle wasting is.

      Have you ever heard of Sjogren's complications or other rheumatology issues causing specific areas of muscle wasting? I know Rheumatoid Arthritis can cause overall muscle wasting but I don't think it can cause one muscle in particular to all of a sudden waste away? The nurses seemed really concerned about this symptom more than any of the others so far... I'm not trying to scare myself by looking online but I feel like I have to research things online since I'm having to wait for my neurologist appointment. Googling muscle wasting, especially for targeted muscle wasting on specific muscles, brings up the most horrible motor neuron diseases. I'm hoping & praying this muscle wasting can also be from my autoimmune disease that might improve with better medicine. 

      Thank you again for listening... this forum might not be helping my symptoms but it does make me happy to see how kind people can be.

      jackie

    • jackiegirl
      jackiegirl

      Posted

      Also I just noticed I never answered your quesiton about how I was diagnosed with Sjogren's originally.... My RA factor & other bloodwork showed it & also I experience extreme dry eyes/dry mouth. It is strange though that my current bloodwork is now coming back completely fine at a time when I'm experiencing the worse neurological symptoms of my life. If Sjogren's (or any other rheumatology illness) was causing such havoc on my neuro issues I would have thought the bloodwork would be showing it more than ever? 
    • faye70665
      faye70665 jackiegirl

      Posted

      Hi Jackie, I realize it has been a while but have you found out anything else about the muscle?This happened to me 12 years ago with upper left leg,I had noticed it getting dressed.The dent In have is huge.My neurologist at the time told me it was wasting due to the nerve damage from neuropathy or maybe sciatica.I have memory problems so I could be wrong about which caused it.I Hope by now you know what it is and have a good treatment plan.
  • christine26761
    christine26761 jackiegirl

    Posted

    Hiya jackiegirl, welcome, I've had Sorgreñs and Fibromyalgia for over 30 years now..I'm also in Australia from the UK originally but a long time ago. I was diagnosed with Sorgrens first 6 years later Fibro, the fatigue, brain fog is shocking not to mention the other symptoms.most of my muscle spasms, pain, fatigue and fibro fog-foggy brain, is due to having Fibro, diagnosed by a Rhumotologist.who said and I have also found many other people with an autoimmune issue often have more than one...hope you find the help you require, I also found eating Paleo style, an enormous help, there is also an Autoimmune Protocol to it, its not a diet, its a lifestyle, well worth googling, it has been really fabulous for me. Be blessed.😘😘😘
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