My name is Lara and I've stumbled across your forum via googling some strange symptoms I've been experiencing recently. Before I start with the usual list of problems and questions, I want to say that I think you're all wonderful and that the forum seems like an excellent and supportive place. Thank you all in advance.
A little about me: I'm 23 years old and I live in (and generations of my family have all been from) the Shetland Isles (the reason I mention this is because we have the highest rates of MS in the world).
My problems started two years ago with allodynia (skin felt painful/bruised to touch). I had this on the fronts of my thighs, my stomach and my upper arms. I saw a doctor who basically shrugged and said "no idea!" so I took on little detective work of my own and concluded that perhaps I had fibromyalgia.
Things deteriorated and I started getting sore muscles, crushing fatigue and electric shock feelings in my body (shooting pain down arm or leg for example). I also developed bad nausea and constant tummy grumbles. I went to another doctor and she diagnosed me with fibromyalgia and neuralgia. Gave me gabapentin and some tramadol slow release for the worst pain. She also put me on omeprazole for my tummy, which she said was acid reflux. She also did blood tests, the only thing that came up positive was ANA but not other autoimmune numbers, as far as I'm aware.
This combination of meds seemed to work very well and most of the symptoms became very manageable then even disappeared for a good long time (6 months or more). Except when I would have a hot bath, then I'd get bad pain in my legs and feel very weak. I even fainted once when standing up to leave the bath. But besides that I was doing much better.
Partner and I moved into a new home and I managed to get off the tramadol and gabapentin for a number of months without any problems. No bath in that house either so no temptation!
Then recently (last couple of months) I was chewing some gum and suddenly felt like lightning was going off in the left side my face. It was pain unlike any I've ever experienced. Just crushing, shocking, gasping pain. My eyes and mouth watered uncontrollably and I couldn't talk, scream or even cry, just freeze up. Since then I've been very aware of the possiblity of that pain lurking (it feels raw and sensitive) and it's "gone off" a few times since. I don't chew on my left side now and struggle to brush my teeth in that area.
As someone who has never had dental problems, I figured that perhaps this is what a cavity with an exposed nerve might feel like, so I booked in with the dentist. I do indeed have a couple of cavities (which dentist will sort), but apparently nothing that would cause that kind of pain. I mentioned it to my mother, who revealed to me that at my age, the exact same thing happened to her and she was diagnosed with trigeminal neuralgia. She takes tegretol for it. I'm currently waiting to see a doctor to see if this is the case with me.
Since this happened, all my other symptoms have started flaring up again over the last couple of months, plus some new ones. Out of nowhere, I can now very clearly feel as though someone has thrown warm water on my leg, for example. I've been convinced of spilling something or even wetting myself, it's such a realistic sensation. I have also developed heel pain in my left foot (feels bruised and painful to put weight on) and pain in the left side of my lower back (feels like a "pulled muscle").
I should also add that I'm not feeling as fatigued this time around though. I'm actually quite busy and managing okay, just trying not to "set anything off!"
Anyway, I typed in as many of my symptoms as I could think of into a search engine and this is where I ended up. I should also mention that my uncle has MS.
I've been healthy most of my life except that I have quite severe asthma and allergies.
Obviously I'm not expecting an internet diagnosis or anything, I'm just so baffled at my symptoms and I wanted to see if this sounded familiar to anyone. I'm hoping that when I see the doctor I will get referred to a neurologist so she/he can listen to my story.
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. :)
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 :)
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.
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.
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.
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*
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