Hi quick question to see if any of you suffer from really dry eyes and also cracked lips? My eyes by night are just so so dry and I keep have to put drops in - wondering if anyone else had these symptoms
Hi Karina Do you take solifenacin for bladder problems as it can have exactly those side effects? If not, have you considered that it is another medication that you are on? Teresa xx
I’m not on any meds yet except for gabapentin and the cracked lips were definitely before I started it and can’t remember if the dry eyes were before starting it or not
I’ve struggled with both problems, and they started at the beginning of me becoming unwell.
I still suffer with my eyes if its bright or windy they run. I combat this by wearing sunglasses a lot and keeping out of wind.
Then at times they are so sore and dry, I use artificial tears which helps.
For the cracked lips I drink over 2 litres water a day to keep the old bowels moving and keep me hydrated.
In addition I carry a little pot of body shop coconut lip balm everywhere with me to be applied as frequently as possible - its very good.
I had both issues before I started on Gabapentin.
I was told not to keep reapplying lip balm because it can cause the lips to dry out further but it’s easier said than done when your lips get so sore that you need the lip balm! I drink easily 2 litres of water a day to help with body in general keep hydrated. The thing with my eyes is that it’s not when it’s any weather conditions it’s just when I’m at home and more so at night time. I just wasn’t sure if these were general symptoms of ms because nobody had mentioned them
Just to be on the safe side see your GP to see if it’s not Sjogren’s syndrome; http://www.sjogrens.org/
This is an autoimmune complaint that can cause other symptoms similar to MS.
As George said Sjogrens can give you dry mouth and eyes and neuro symptoms - if you haven’t had an ANA screen (its a blood test looking for certain auto-immune disorders) then perhaps its something worth checking. As I’ve been keeping a watch on your diagnostic journey I’ll also add that sometimes when our bodies are combating something else another illness or ailment and our immune system is overstretched or down things like our nails, hair, lips eyes can be affected. Certainly mention it to your neuro, I know if you have problems with either your facial or trigeminal nerve (I can’t remember which one) it can affect the surface of the eye and make it feel dry so its still valid.
Symptom wise - For the eyes perhaps see an ophthalmologist if you’re under one or see the optician. You can also get some drops to lubrictae your eyes in the meantime if you’re unsure and want to wait till you see the neuro. If you are going to get some lubricating drops just be wary if you have any allergies some are with preservatives. The pharmacist or optician can advise you on this or even the GP for that matter. You don’t have to suffer these symptoms whilst your waiting for a diagnosis.
Hope you get some answers soon Karina
I’ve suffered with very painful cracks at the corner of my mouth for years on and off. I always carry a pot of lip balm and have mentioned it to the doctor as I have become anaemic and wondered if it was connected with anaemia but doc just shook his head and said it was because of the medication I am on (baclofen) but have only been taking baclofen since April and have had cracked lips for years.
I also suffer badly with dry eyes which started at Christmas when I had my last really bad relapse. I have been prescribed eye drops on permanent prescription and have been told I will have this for the rest of my life. Have seen 3 different ophthalmologists so far - the first one said it was Neurotrophic Keratitis, the second said it was Trimeningal Neuralgia and the third said it was because the nerves at the back of my eye that control my eye muscles are damaged. This last eye specialist simply told me to go away and put up with it and learn to live with it. As I was obviously not happy with being told that I have asked my GP for a referral to a Neuro-Opthalmologist. He has agreed to refer me but he was extremely reluctant, I really had to fight my corner. It’s only because I believe my eye problems to be connected to everything else that’s been happening that I really fought for this; I’ve had blurred and double vision problems for years on and off but now since the episode at Christmas I’ve been left with some residual problems i.e I can’t see clearly at night or in bad light and there is still pain at the back of my eye. The clarity has gone, there’s no sharpness and I know it’s not right.
Don’t know whether any of this seems familiar but might be worth asking your GP for a referral to ophthalmologist. Dianne x
Hi Reemz and George - I’ve had lots of blood tests done - I’ve had anti-nuclear antibody test which was negative, I’ve had DNA antibody which wa negative, I’ve had ENA screen that was negative, I’ve had Cardiolopin Ab test which was all in normal limits and rheumatoid factor test which was negative. I’ve had full blood count which showed up high white blood cell count but has now gone back to normal, complement test which was all normal, immunoglobulin tests - the immunoglobulin G & M test were fine and the a was raised. Other than those tests my liver function tests keep coming back with high alt and high bilirubin. All I’m waiting for is the results from my lumbar puncture and my VEP and SSEP tests. Still waiting for the PET scan of my most to check and rule out things there. But nothing seems to point to anything in the bloods except my liver and raised IGA test - anyone understand these 2 combinations?
IGA is an anitbody. Raised IgA can happen due to a chronic, infection liver disease, sarcoid, myeloma just to name a few. It could tie in with your liver results I guess but this is where my knowledge unfortunatley isn’t enough to give you those answers.
I guess the PET scan will help so they’re obviously wanting to rule out the big things first which is good.
I really hope you get some answers soon Karina
It’s just horrible waiting especially when the gps don’t know much about any of it
MS/ not MS is bad enough never mind the other possibilities you’re having to go through. Hang in there.X
Thanks very much appreciated xx
Reemz has far more knowlege than me; you just hang in there gal.
I have serious dry eyes and dry mouth but never cracked lips. I was told to chew gum to keep my mouth wet and to use mouth wash twice a day and ive been prescribed hylo forte and visco tears for dry eye. They are both very good see if you can get them prescribed to ease the discomfort… also theres a night drop which is good lacralube perfect for night time before you go to bed xxxx
Brilliant thanks I will speak to the gp next week and see if they can prescribe something. Booking an opticians appointment as well to check my eyes to make sure that there’s nothing obvious going on