Hello everyone. I posted here once and have been reading posts the last few weeks. I have been in DX limbo for over a year now. Been seeing a neurologist for a while, MS was suspected but all tests have come back negative and I am thankful for that.
I've been to an opthomologist three times and finally a Shermer's (sp?) test was done after I requested it. One eye was a 3, the other an 8. She said that is why I am having eye discomfort and blurry vision and told me to see a Rheumy. I also went to her for shaky peripheral vision that is constant and gets worse when in flourescent lighting. My face will tingle after a while of being in this lighting or on a computer. She said this was neurological, a migraine variant, not related to Sjogren's. I went to the neuro today and when he heard about the eye test, he shut down and said a Rheumy will have to DX and treat me, but he will continue to monitor me. He said the visual disturbance can be caused by Sjs and he couldn't help me with it. Also said the tingling in my body that gets worse in heat is a manifestation of Sjs.
Has anyone experienced these symptoms with Sjogrens? I go to the rheumy June 5 for more testing (blood tests done 9 months ago were normal) and I am so afraid he is going to tell me it is all neurological and go back to the neurologist.
My main symptoms:
tingling from head to toe
fatigue
muscle and joint pain, esp. muscles in forearms and back of thighs
tight calf muscles
dry eyes
mouth somewhat dry
visual disturbances that make me feel dizzy and disoriented, esp. in stores with flour. lights
chill bumps up and down arms and legs even when not cold
weight gain despite exercise (this is new to me)
39 yr. old female
thanks for any advice
Hi Chris and welcome to Sjogrens World!
So sorry to hear that you are in diagnosis limbo land and getting the run around from some of your docs.....unfortunately there are many people here that can relate to that!
I hope you have a good appt. with a good rheumy that will test you for sjogrens or other AI's and treat you whether your tests and labs come back positive or not! That's what important...to have a doc who is able to think outside the box and treat your symptoms to make you more comfortable until you can get some more answers and maybe even a diagnosis at some point in time!
In the meantime...read and learn all you can and make a list for your doctor of your symptoms, concerns, and questions.That way you wont forget anything important when you go to the appt. Good luck and let us know how it goes!
Hi Chris--
Almost all of the symptoms sound "normal" to me. ;D.............Since you are (only) 39, they will blame the weight on your age. I can remember eons ago when I got around 40ish, they blamed everything on "you're getting older you know." To listen to them then, you'd never think I'd make it to my 60's, but I did.
Even if you test negative again on the tests, you need to ask if the rheumy will treat you symptoms. You also do need an ophthalmologist at least once a year to keep an eye on your eyes. (bad pun) You should use artificial tears without preservatives several times a day if necessary. Using something thicker at night like GenTeal gel can also help.
Lucy
Hi Chris :)
Welcome back to Sjogren's world. :)
All your symptoms could be Sjogren's and most of them could be caused by something else as well! That's why pinning down autoimmune diseases can be so tricky.
I'm surprised you neurologist has been so dismissive as some of what you describe certainly sounds neurological.
The rheumy is a good place to go though. They'll do the right blood tests and hopefully treat your symptoms as there are meds that definitely help.
I'd also ask to get your thyroid tested, if you haven't already. Thyroid problems quite often go along with SjS and if your thyroid is underactive it could cause weight gain, muscle and joint pain, fatigue, dizziness and feeling cold. My thyroid is underactive and I've always had a job working out what symptoms are caused by what.
I'm sure you could get thyroid bloods done before you see a rheumy. May as well rule it in or out!
Keep us posted. Take care - Scottie :)
Chris, Good luck with your Rheumy appt. Sorry to hear about the problems you are having. Hopefully, the Rheumy can help you find some answers. I have some of the symptoms you are describing. Lynnmarie makes a good point about writing thing down. I have left a Doc's office only to remember something later that I wish I had mentioned. Roxanne
Hi Chris,
Let me also welcome you to the SJS World! Please do look around as there is a ton of topics and oodles of information that you might find interesting.
Like Scottie says, the symptoms could be SJS, another AI, or a combo of several different things that a lot of doctors have trouble trying to diagnosis them. I also believe that a good rheumy is worth his weight in gold. And she also has another good point, have you had your thyroid checked? If your thyroid has slowed any, it can also cause some of your symptoms.
I'm like you, except for my ESR, I'm sero negative and I know how you feel! It's so hard being out there with all your symptoms and no "real diagnosis", but like someone once told me, as long as the symptoms are being treated, does it really matter what they call it? I'm lucky as the rheumy is treating me as though I'm positive, and I'm so grateful for that. Has your doctor put you on any meds for any of your symptoms? If so, what are you on?
Hang in there and please do let us know what the rheumy says.
Take care -
Patze
So sorry for your struggle. Boy do I know how you feel. I have been dx with MS.. then it was ruled out.. then still monitored but the neuro did know something neurological was going on. I see a Rheumy cuz the MS docs thought I had that..it was ruled out.. by 2 Rheumies but yes I have those "hotpoint" but then so many symptoms overlap from ANY autoimmune disease.
What I DO have and its finally diagnosed is an Autonomic dysfunction. AND that can cause dryness in eyes etc. I have very dry eyes..mouth and EARS. I use Salagen if that is the generic Pilocarpine and Restasis. Those 2 meds are great! So now I dont care what the NAME is but want relief for the symptoms. Docs are happy when YOUR symptoms fit into the diagnostic tests /labs ..its when it doesn't they do not know what it is for sure. AND they can be ok. I would hate to still be on the meds for Sjogrens if I do not have it.. and it looks like I dont. BUT my symptoms ARE being treated.
Good luck in your search.. I know how frustrating it can be.
Warmly Jan
Hi Chris
Your story sounds really familiar, from the MS diagnosis/diagnosis withdrawal to the long time in limboland. Your symptoms are strangely familiar too! The good news is that the neurologist and rheumatologist can work together on your case, as long as they're both willing to. SjS as you may have it is sometimes called the 'MS mimic' and it confuses lots of people. It looks like MS but the MRI and LP tests don't prove that. I finally felt better about being in 'limboland' for so long when I realised that, as Patze so wisely says, it really doesn't matter what label you're given as long as your symptoms are treated. Once I got the SjS diagnosis I was a bit surprised because dryness wasn't really a big issue for me then.
Are you keeping a symptom diary? It's really useful both for you and the specialists, because you can be specific about symptoms and look for patterns. I tend to be very optimistic by nature and gloss over difficult times, but when I write things down I have to face up to the truth.
Try to describe the pains and tingling in as much detail as you can. Are the pains in your joints/muscles/all over? Do they stay in one place or move about? Does applying heat or cold help? Does movement help or make things worse? Does the time of day make a difference, or what you've been doing? Then think about the tingling in the same way. Do you get tingling across your head and down your face? Or across your lower back and thighs? Do you have any numb patches? Or do you drop things? What about headaches? If you can be specific it will help diagnosis.
I know what you mean about weight gain. I was very slim until my late thirties - I'm now 48 - and then put on weight for no good reason. I thought it was a perimenopausal issue but now I'm wondering if it was part of SjS. Now I just don't worry about it - it's way down my list of priorities!
Let us know how you're getting on and how your rheumy visit goes.
Thinking of you - Chickpea
Thanks so much for everyone's reply. It helps to know that others understand the limboland as someone who has not been through it cannot.
I have had vitamins and minerals tested as well as thyroid. All normal. I think there is a special test for Hashimoto's and that regular thyroid tests can miss it. Is this correct? I will ask for that when I see the rheumy.
I have read some of the articles on the neurological aspects of Sjs. yikes! trying not to worry, but I sure wish I could know what I have so hopefully we could slow it down. worries me that many of my symptoms are neuro in nature.
Does anyone have the symptom of visual disturbances beyond blurred vision, meaning shaky perppheral vision and an aura like phenomenom, worse in flourescent lighting and face tingling to go along with it. Happens when I'm on the computer too.
I am currently on no meds, just Systane eye drops and fish and flax seed oil. Tried Gabapentin for tingling a year ago, but it didn't do much for me, just made me more tired.
MJan, how was your Autonomic dysfunction diagnosed?
Thanks again all. This is a wonderful site!
Hi, Chris
Your descriptions of your symptoms sound so much like mine it's scary. I have been to the neuro being told possible MS then when the MRI and the blood test came back neg, the neuro said it's not neurological and I can't help you. Talk a bout a blow. I was diagnosed with Fibromyalgia but I knew something else was going on. I was having a lot of problems with my eyes and working on the computer all day under fluorescent lighting doesn't help. I went to the opthamologist and she told me to get to a rhuematologist because she believes that I have Sjogrens. I can;t get in until July 29th. I am on Cymbalta and gabapentin, but still have the numb/ tingly problems. The horrible bone/ muscle aches aren't as bad as they were though. I know this is miserable. Do you get bad migraines as well?
I'd love to keep in touch and keep track on what you find out. I'm only 35 so we're both in the same boat- young and fighting a unknown.
Hang in there
Leslie
hi, i am new here, and i am the same drs told me fibromyalgia, then maybe ms then lupus, they passed those three around for years. i did every test imaginable, i have heard well there is always a chance of a false negative. i just want you to know hang in there you are not alone, take care sue
Lesmom,
I am sorry for what you have gone through.
No I do not get painful migraines, but I have the visual disturbance 24/7, worse in certain situations. Optho called it a migraine variant, neuro said if it is SjS it is a manifestation, but offered no help with it.
Hope you get some answers soon. This is so frustrating and has been a scary experience. Has the Cymbalta helped you? I tried it for a couple of days last summer, but it made me very sick to my stomach. Wondering if I should give it another try.
I'll keep in touch as our experience seems similar and maybe one of us will find something to help.
Thank you Chris and the same to you
I'm headed to my GP in the morning. I must be having a major flare or something and have felt very ouchy for most of the day. The opthamalogist said I have the optical migraines along with regular type of migraines. I see spots oh fun. The Cymbalta has taken away the deep muscle pain that was forever a constant. I tried the lyrica, but it made me too tired and detacted.
I'll let you know what the doc says. Hang in there!
Leslie
Hello chrisgirl
I am 39, and have all of the symptoms that you listed with the exception of the chill bumps. I do often feel that I have a fever, but when I check my temperature it is usually low... around 96F. I have not been diagnosed yet, but I was drawn here by the symptoms and the search for answers.
Take care...
Scott