Hi there Carol
Your kind words are very much appreciated. You're in my thoughts.
-Lara
Hello Ren
Thank you very much for taking the time to reply to my post.
I have gone through the Health Pages that you pointed out. Thanks, they are a really excellent resource! Quix really knows her stuff.
I'm so sorry to hear you suffer from trigeminal neuralgia. If it's what I'm suffering, I (literally) feel your pain. It's terrible. The fear of bringing on an attack is pretty bad too. I'm sending comforting thoughts your way.
I've never seen a neurologist before and, as I'm in the UK, it will be up to my GP whether or not to send me to one I guess! I will have to see next week when I have my appointment with her.
I'm sorry to hear you also suffer with allodynia. I find it can be very difficult to get comfortable when it's bad, and hugs etc. from Partner and Pets are out of the question. Which is horrible because they are such a comfort!
I actually did get sent to a rheumatologist when I originally presented with positive ANA. Sorry, I completely forgot to mention that in my introductory post! It was concluded that I have some development of arthritis in some joints (not rheumatoid though) but I was negative on the rest of the autoimmune scanning tests.
I also forgot to mention, one of the reasons I got sent to the rheumy is that I get very frequent eye infections and mouth sores/ulcers. But rheumy couldn't find a reason for these symptoms.
Thanks again for posting to me. It was very reassuring. I hope you're doing okay. *good thoughts*
Hi Michael
Thanks for replying to my post and sharing your experiences.
Was your shooting facial pain diagnosed as trigeminal neuralgia? Sounds very similar to what I experience, except mine is more in the side of the face/jaw rather than the roof of the mouth upwards.
I'm sorry to hear about the trouble you have had with both MS and spinal surgeries. That must be a lot for you to handle. I am sending good thoughts your way.
I've had issues with fainting for a good few years (especially upon standing) but I've always figured it was blood pressure related. Plus, I'm a bit underweight and find it difficult to eat as much as I should, so probably just related to that. Unlike your passing out which seemed to be very serious.
I have not really had any eye issues either. I sometimes get occular migraines (I think) and, what I presume are, floaters, but no vision loss.
I can't imagine the anxiety such symptoms must have caused before your diagnosis. Thank you for sharing your story. It was very helpful to me. Best wishes to you.
Hi Lara and welcome to the family...
I wont try to add anything to the already great advice you have been given but I did want to welcome you... I hope you will stay with us so we can all get through this together...
I'll be praying,
Carol
Welcome Lara,
Glad you found us! We do have a supportive, informed group of people here on our forum. first, let me introduce you to our Health Pages, located in the upper right hand corner next to the yellow icon. The is a wealth of information on a variety of subjects in these pages. Most of these pages were written by Quix, a retired pediatrician who also has MS. ALL the pages have been scrutinized for accurate information.
Thanks for the great introduction post! It helps us get to know you better and offer better advice. I am a sufferer of bilateral trigeminal neuralgia and truly know the agony it can cause. I , too, am cautious about brushing my teeth when it's in a flare. I take Tegretol like your mother. It does help quite a bit with the symptoms.
Have you been to see a neurologist about your symptoms? The allodynia and other paraesthias you experience are very similar to some of my issues. They can be truly aggravating. Since you have a positive ANA , does that mean that they ran other rheumatalogical tests such as double strand DNA, tests for Sjogren's Syndrome (one of the excellent mimics of MS, see Health Pages for more) , rheumatoid arthritis,etc.?
It is not uncommon to have more than one autoimmune issue. My suggestion and it is just a suggestion, follow up on the rheumatology testing and if those are negative go forward and see a neurologist regarding the neurological sounding issues.
Feel free to post more information as it pertains to your symptoms or if you have more questions. And, remember there are no dumb questions. Feel free to ask anything.
Welcome again,
Ren
Lara, as for the shooting facial pain yes , most definitely. I had dental work done couple years ago, dentist was giving me some numbing injections , and he gave me one and I almost punched him it hurt so bad. Anyways, I just thought he hit a bad spot never gave it any thought. Then last summer , few months before my DX, I was awakened by a pain I can't describe. it was like someone stabbed the roof of my mouth with an icepick up into my brain. I have had this happen bout 4 times, doesn't last lond but it is excuciating . I seem to have had MS for awhile according to my neuro, problem was I have had 5 spinal surgeies since 2003, so I attributed all my pain, issues of balance, numbness, falling to that. Last August I began passing out, went to cardiologist, had tes after test, all came back fine. The passing out turned into me having seizures, I had Cat scans, MRI, a LP , and then I went blind in my left eye for 4 days, and eye dr and neuro both agreed with all findings it was MS. I am not sayin you have that, you should see someone sooner then later and if you need to talk, feel free to let me know, the best to you.
Michael
Hi there
Thank you so much for responding to my post :)
It's almost definitely not a gluten allergy issue though. I've had Coeliac testing and I'm negative. Plus, symptoms don't seem to be in any way related to what I eat. Also, it's only nausea and my upper stomach that I had a problem with, nothing "down below!"
I think the doctor was probably right about acid reflux in that case as I am still on omeprazole and I haven't had issues with my tummy since I went on it. However, I thought I would include those symptoms as I'm not entirely sure whether or not they're distinct or related.
But thanks anyway for sharing your experience. I really do hope that your symptoms don't bother you too much :)
Have a happy and healthy day
-Lara
Believe it or not, this might have started due to gluten allergy. There are 3 blood tests you should have for gluten. If it's positive, you may discover you are temporarily reacting to other similar food proteins, like I am. I can't eat nuts at all and have problems with dairy. These may get better, but I can never eat gluten again. I don't mind because I feel so much better. People from the UK have a high rate of Celiac, or Coeliac to you. :)