Hi Everyone....I am new to SWF and just recently had a medical "scare" that drove me straight onto the internet to try and find some answers.
It all started back in 2006 when I was diagnosed with a multinodular goiter and subsequentlly had my right thyroid removed. This process was time consuming from diagnosis to surgery due to undetermined biopsies. On the "thyroid front", my left throid seems to be working well enough to maintain my throid levels so this is just a watch and see thing. Shortly after that in 2007 I was diagnosed with discoid lupus. Fortunetly for me, there didn't seem to be any indication that this was systemic. Although it always sits in the back of your mind that things can change. In 2009 while visiting the dermatologist, he did blood work on me which was positive for ana. He said I shouldn't worry but in telling him about my dry mouth and slight dry eyes, he told me he wanted me to see a Rhuem. so off I went. After talking with the Rhuem and describing my symptoms, he suspected sjogrens and my blood tests confirmed it. I have been very fortunate that my sjogrens symptoms seem to be mild (with the exception on dry mouth) until last week.
I woke up one morning with eye movement pain. It slowly progressed to what the ER drs. believed was a migraine. CT scan was normal. Pain was unbearable!!!!! I was given pain medication and sent home. The following morning......I woke up with double vision. I was admitted in the hospital and had an MRI and an MRA, both normal, and was told by the neuroligist that it was a possible orbital psuedo tumor "or" 6th nerve palsy. I was put on 60mg of prednisone a day and am waiting to see the neuroligist on July 26th. It took about 5 days on the meds for my vision to return to normal. I was told that based on my tests, they do not believe this is MS related but the dr. said this could be related to Sjogrens or Lupus. I guess my question is....Does anyone have a simiilar story? How common is sjogrens related to neurological problems??
I appreciate all your thoughts and comments. THANKS
Mimi
Welcome to the forum Mimi. Sjogrens is related to some neurological problems.
Hi Joe...thanks for the reply.
Like I said, my sjogrens has been fairly mild until recently. Having these neuro symptoms happen so quick and out of left field has really stopped me in my tracks.
At this point, its fear of the unknown.
Thanks again :)
Mimi
Fear and its related anxiety I believe is the greatest challenge that people with AI diseases face. Panic is often the outcome.
1. don't panic - your thoughts can increase your pain when you panic. (I use the meditation to change my thoughts)
2. Breathe - Breathe through your pain.
3. Meditate - "I am", "Calm" it is a breathing exercise that I recommend
Wagner:
I was diagnosed with MS in 1993 and just recently with Sjogrens. The more that I read, SJS can mimic many of the neurological symptoms of MS. However, distinctions in the diagnosis can usually be made with the appropriate testing.
I have permanent double vision caused by the MS and wear glasses with prisms to correct for it.
At first my internal medicine doctor thought my new symptoms were related to the MS. However, all of my blood work, eye and salivary gland testing confirm SJS, with a possible lupus like syndrome.
I am told that the autoimmune system is complicated and more than one disease process can be going on at a time. Once a person has one autoimmune disease, it is not uncommon to get diagnosed with another.
I hope this helps.
Good luck, Buddybelle
Hi Mimi
Welcome! It sounds as though you've been through a lot recently. I hope the Presnisone is starting to make a difference and that your vision is normalising, and the pain is lessening. Did you get any reaction to the Prednisone? When I started it a few years ago I also began on 60 mg. I had been warned I'd be hungry and unable to stop eating ... but I became manic about cooking, not eating. I'd stop in the middle of a favourite activity - like watching soccer or a detective drama on TV - and disappear into the kitchen to bake. It didn't last long, to the disappointment of my children!
For some, but not the majority, of SjS people neuro issues are part of our SjS journey. Some of us start with them rather than dryness issues; others develop them slowly. But it seems most people don't. I'm one of those people who started with them and was first diagnosed with MS, with a SjS diagnosis after a couple of years. If you put 'neurological issues' into the search box at the top of the page you'll find lots of discussions about them. Don't be scared. There are lots of us on the same road and we look after each other - there's lots of good advice here and lots of friendship.
Visit often and let us know how you are.
Thinking of you - Chickpea
Chickpea is right. There is a lot of great information here. When you post a question everyone offers information, shares internet sites, and discusses their personal experiences.
Hi mimi!
Just want to welcome you to Sjogrens World and hope that you find this place helpful. We have a lot of kind and knowledgeable people who come here and you will find all of the information, friendship and support that you want/need! :)
Welcome, Mimi! ;)
In regard to your question, I think you'll find lots of info. here on neurological problems. You may try putting this into the search box; there's been quite a few posts.
I can understand your feeling scared and anxious. These feelings seem to be common to all of us from time to time and can be a great challenge. You'll find people here who understand and you can share with. As Chickpea said, we are here for one another to support, encourage, share and learn from one another. It's been a wonderful experience for me!
Please post anytime, ask anything and feel free to share more whenever you like. Looking forward to hearing more from you.
Take care,
Melinda
Hi Chickpea
The prednisone has totally relieved the double vision and pain and I noticed right away that my lupus rash was quickly subsiding as well!! This is my first experience with prednisone and YES......I am hungry and am struggling to eat well and not overindulge!! So far I definetely feel like I am losing that battle. lol
I am not sure if its my medication or just me but I have to say when I read everyone's replies.....it brought tears to my eyes!!!! I so very much appreciate everyone who took the time to respond and I want to THANK YOU ALL.
I am looking forward to reaching out and opening up about my illness. I have kept so much to myself simply because it is easier then trying to make someone understand what your going through. I realize here that I am not alone and there are so many wonderful people who want to help.
Thank you all again
God Bless
Mimi
Hi Wagner:
A warm welcome to this forum!
I am also taking a high dose of Prednisone too right now, actually am on 100mg a day dose for some lung issues that are caused by Sjs. The prednisone is helping me with a number of my autoimmune issues, although it doesn't seem to be helping with my lungs and I also had the lupus rash and vasculitis when I started this med both of which are nicely responding so far. I've been on this high dose for about 6 weeks now myself and have found that for me dealing with the hunger side-effect and avoiding the subsequent weight gain is possible although one does have to work at it.
First, I make sure that I eat both protein and fiber at each meal. Both of these types of foods are slowing down the absorbtion rate of the food and help me quite a bit with the hunger pains. Also I make sure that I have pre-made healthy snacks that I can easily grab if I need to get a boost. I am eating some fruit, veggies, greek yogurt and also some home made low fat bran muffins.
I also make extra effort to have all of my meals planned, (breakfast, lunch, dinner and snacks) so it really helps not to have to wait until I am starving and then by impulse just grab whatever is close at hand. The impulse to just grab what is there is very strong, so planning is really key and I eat about 5 to 6 times a day, but all smaller meals so that I'm never starved at any time. I also chew a stick of sugarless gum to just get me thru some of those moments when I need to have something.
I don't know how long before your drs decide that you can start to taper your prednisone dosage, but for me I have been told by my Rheumatologist that it will take 7 to 8 months before I can be weaned off this drug.
Sending you loads of encouragement,
Daisy
Mimi,
You are sooo welcome. No, you're not alone in this. We are like family here! I think we all understand how hard it is to try to explain to others. No one really knows what we experience unless you've "been there, done that" like us.
There's a huge posting here about what others tell us to do, suggest, and basically show how they have no idea...my brain fog has me in its grip today so can't think of the name of it. If I do, I'll post again...or maybe someone will help me.
:-[
Have a blessed day,
Melinda
Mimi:
I have been on 1000 mg of IV steroids (methylprednizolone) for 3-5 days o treat MS relapses. I am surprised that I haven't had many side effects.
One thing that has resulted in part from the steroids is osteoporosis. Now, I am very reluctant to take steroids. If you are on them for any length of time, please be sure to have regular bone density tests.
It is unfortunate that all drugs have side effects. I guess we have to evaluated the risk/ benefit ratio.
Take care.
Buddybelle
Mimi,
Welcome! I've had my entire thyroid removed due to a goiter and growing nodules: Hashimoto's. I didn't have any neurological issues until my Sjogren's symptoms showed. For me they came as a pair. I do not have MS but was tested because symptoms are similar. Good Luck and I'm glad you found us here, this is the best site ever ;D
Carie
Hi Mimi
I'm relieved that the prednisolone has helped with the double vision and the rash. What a relief! The hunger is a bearable side effect, I reckon! But, as Buddybelle says, osteoporosis is a real issue with long term steroid use. I knew this in theory but with all the treatments, symptoms etc I sort of forgot about checking up on bone density and when I did I'd already lost a lot. Don't worry about it now but maybe list it as a query for your next hospital visit?
Visit lots and tell us how you are doing.
Take care - Chickpea
Chickpea,
So far so good with the prednisone. Not a fan of some of the side effects but hopefully this is short term for me. I'll see how things go with the neurologist at the end of July. Hopefully he thinks weaning off at that point is a good idea. I will definetely keep in mind the osteoporosis thing and I think I will even bring it up to the neuro when I see him. This is all very new to me as far as the meds are concerned and I really appreciate all the advice.
I will keep everyone posted on my progress. Thank you all for your support and concern. It has deeply touched me. THANKS
Best wishes to all
Mimi