Been reading this forum for a few days now and feel posting my situation might be help as I go through the diagnosis process.
I began to feel very fatigued 6 or 7 weeks ago after a virus. I would wake severely dehydrated (dry mouth, eyes, dark bubbly urine). Whilst at work I would notice twitches particularly in my lip and my eyelid. My number of symptoms have now increased significantly (see list below) so I made an appointment with my GP who referred me to a Neurologist. The Neurologist made me perform some basic coordination and reflex tests which according to him I passed (my view is I am just in the early stages so would not expect to fail these tests at this stage). In the last few days since my Neuropathy related symptoms have altered from being a painless lack of feeling to now being more of a tingling and small electric shocks. I had a MRI brain scan yesterday (awaiting results) and the neurologist is writing a letter to my GP to complete a series of blood tests. Through reading this forum it looks like I should have been given a spine MRI as well. The Neurologist advised that he will look to do a more extensive testing on my Nerves. I am trying to stay positive that something will come out in the blood work revealing this is some kind of Vitamin/diet issue that can be easily rectified but based on my research using doctor Google that appears unlikely given my range of symptoms. The severe dehydration I get during the night appears to be a bit of an outlier as a symptom. I am 37 years old with no prior health issues. Would be useful to get feedback to understand if there are any questions/tests are should be asking/requesting.
Head - Tension headache, brain zaps, quivering lip, flickering eyelash, stiffening jaw, nerve pain to chin, right ear occasionally rings for a few seconds
Legs - stiff, struggling with balance, intermmitent pain in shin, feet, tingling and light electric shocks
Arms/Hands - Stiff, tingling, light electric shock pains, experiencing difficulty putting in contact lenses and using IPAD
Lower back and Neck stiffness and ache
General - Fatigue and joint issue. My joints appear less lubricated.
I am sorry that you are having such a worrying time. So many symptoms all at once must be awful for you. I will keep my fingers crossed that it does turn out to be something that is easy to resolve. Have you been given some steroids to take to halt your symptoms, if so,hopefully these will have some effect soon.
Getting diagnosed is a long process in most cases unfortunately. Reading through some.of the forums helped me a bit although there will be many different experiences to your own. Definitely find the ‘who is the oldest person you know with MS?’ post - it’s not all doom and gloom (I know it feels that way at the moment when you don’t know what is happening ).
I was only.diagnosed at the end of Oct,so still pretty new for me too, so I definitely know how the worry feels. Lots of people on here to help though, but it does take a while to get some replies (I waited a week for my first reply to my panic message and nearly didnt come back on again).
Thanks for your quick response. I am not currently on anything. I am fortunate so far in that I am not in severe pain. My concern is that this will change shortly as there has been a progression in the last week from just stiffness and a lack of feeling to the mild tingly/Burning and electric shocks (about 1/2 out of 10 in terms of pain). Particularly concerned about face as I have read that proper nerve damage to the jaw is about as painful as it gets. Fortunately I have private healthcare with my job so am taking advantage and will just keep pushing to get my diagnosis and treatment ASAP. As I mentioned in my first post the one strange symptom I have is a get severely dehydrated during the night. I will close my eyes and then wake up after 45 minutes later with dry mouth and eyes and whilst I am dehydrated the neuropathy symptoms are more acute. As I hydrate during the day I still get symptoms but far more sporadically. I will keep the thread updated. Cheers
Hi jonny, can you drink water at night? I do if I get thirsty. It usually wakes me up! Now you`re under a neuro…let him do his tests and ask if there is anything you need to ask about. Quite often, initial symptoms don’t stick around all the time. Keeping a diary is a good help. xxx
Thanks Boudica. Currently I sleep with a water bottle. What is strange I can lay on my bed for 45 minutes in the afternoon without taking a sip of water and I am fine but if I do the same thing at night I dehydrate quickly. As I hydrate during the day my symptoms improve (although do not completely disappear). I am sat here now watching the football and my double vision has nearly gone. In the morning I can’t watch the TV without tilting my head back.
i have a slight fear now of going to sleep. It is a bit like that horror movie nightmare on Elm Street. I have moved back in with my parents for the time being rather than risk being alone in my flat.
Just a couple of questions in case anybody knows the answers.
How long does a brain MRI typically take to comeback?
One of the issues I am having is with my eye sight. I have double vision and floaters (a couple of small spider webs in my vision). Would people generally set-up an appointment with an optician to look at this separately?
I am starting to get real stiffness in my Jaw. For those with MS will this typically result in Trigeminal Neuralgia or are there members who have had Jaw symptoms for years without getting TN?
It really depends on your area but up here in Scotland they’re taking around 2-3 months to come back.
Vision issues is common with MS but I’d still make an appointment to see your optician just to be sure!
The jaw issues, I can’t really answer as I don’t have much experience with this but I’m sure someone else can be more helpful with this!
I had TN, cured now through Gamma knife treatment, that’s why they’re checking me out for MS (lesions on MRI).
There is a connection but the two don’t always come as one.
The stiffness is not typical of TN (off the scale pain is).
Still needs checking out though, either as part of an MS diagnosis or something coincidental.
I hope you find something out soon, all the best.
No, not that long in Dumfries and Galloway! My scans were on my Consultant’s desk in less than 3 weeks. The result was positive but that should not affect wait time.
Quick status update. Currently awaiting results of brain scan (2 weeks on Friday) and blood work (completed on Saturday). At this stage I can still cope but the tingling/burning has got more painful. Today I went to the optician to have my double vision looked at. They confirmed the nerve health of my eye was good. This came as a real surprise as I was expecting ON. They are going to refer me to a specialist to do further tests
Heard today today from the Neurologist secretary that that my Neurologist is waiting for his favourite radiologist to return on Feb 6th to review my scan. Not quite sure how to interpret this. I have asked for assurances that somebody has reviewed my scan to ensure there is no tumour. I can’t believe nobody performs an initial review. I have requested a meeting for Feb 7th to go through the scan with the blood and potentially complete EMG testing. My GP has signed me off work until late Feb. I also need to arrange a hospital appointment to complete more detailed eye examinations following my optician appointment yesterday to get to the bottom of my double vision
I’m newly diagnosed too so totally understand how scary and worrying it is. I was very ill in Nov with lots of symptoms (optical neuritis, weakness, loss of feeling in my legs and crippling brain fog). I was very lucky in that my GP sent me to A&E and they admitted me for a week where i had spinal and brain contrast MRI, lumbar punctures, many, many blood tests. I was sent home with a 90% confirmed MS diagnosis having never had any illness before and i’m neary 50. So, i’ve now got an appointment with an MS specialist and the MS Nurses.
It’s been so challenging, the fatigue, emotional incontinence (mostly crying - if only it was hysterical laughter!) and paranoia about every little thing is the hardest at the moment. My husband spoke to the helpline yesterday who were amazing and sent him loads of information. I’ll be calling them today.
I really hope you get some answers soon and you can start to find your new normal. Very best wishes to you.
Thanks Mandy. It has been a rough 24 hours. Last night was my toughest so far with my neuropathy. The burning/electric shocks are now up to about a 5/10 on the painometer. The attack lasted for a couple of hours before I could get to sleep. I am signed off work so today i went to town to break up the boredom of sitting around at my parents (staying with my parents as was starting to get depressed being alone at my flat). I now have concerns that the nerve damage is starting to spread to other areas like my bowel but like you mentioned you are naturally paranoid about everything. I appreciate that I am fortunate in so many ways having the support of my work with Private healthcare and my parents being young enough to still assist me.
I will have feedback on my blood work and scan in the next week to 10 days and should hopefully make some progress on my eyesight. Interesting that you had optical neuritis as I was expecting that is what I had. However, when I saw the optician earlier this week they ruled it out as my optic nerve appeared healthy on the scan. They are requesting that I go for more detailed tests at the hospital to get to the bottom of my double vision. I am a contact lens wearer and I have noticed my eyes get very dry in the morning. To me though it just seems too coincidental if this is not linked to the neuropathy I am having in other parts of my body considering it appeared at the same time. If I can fix my vision I would probably be happy to try and go back to work.
Joining this forum has certainly helped and updating my thread regularly does feel theraputic
I’m a varifocal wearer Jonny, and i have to say it’s the only time i’ve been pleased to be short sighted as at least i got a bit of respite from the double vision when i took my glasses off! I’ve had the awful night time electrical shock symptoms too, like a piston going off. I can feel it and hear it in my head so very disconcerting. It seems to occur when i’m really knackered and trying to drift off so i will assume it’s fatigue related. I saw my GP yesterday who said that it’s normal to plateau when you’re recovering as well. I felt like i’d come on leaps and bounds only to spend the last 10 days feeling like nothing was improving and that other stuff was creeping in. it’s a confidence knock and hard to mentally get past it. Amazing that your parents are supportive and looking after you. Nothing quite like having your Mum to do what Mum’s do best
not the best weekend I am afraid. just a quick question. Since my first symptoms started I have had tingling in my face. One of my big concerns was that this would naturally progress to Trigeminal Neuralgia (TN). Today I had my first bit of shooting pain in my face where my jaw connects to my cheekbone. I was just wondering if other people have experienced long term tingling with minor pain without it graduating to full blown TN. At the moment I am living in fear that any day I am now this is like to progress to a full blow TN attack.
Hi Mandy & Johny, reading both your comments took me back to my early days…1998! I was terrified and wondered what the chuff was going on and how disabled I might end up. Luckily I never had any problems with vision/optic nerve. My main problems were (i say main…but there were many)foot drop. I had soo many nasty falls. I was upright talking to someone one minute, then they
d wonder where Id gone…I was hitting the deck more often than a drunken sailor!!! Your are both getting looked after as well as you can be. So, as an oldie at this game, can I give you some advice please? Look after yourselves, pace your activities, accept help when it is offered and NEVER, EVER, EVER beat yourselves up for having this or any illness. There are oodles of folk hereabouts who have lived decent lives with MS. It is d0-able…honestly! Much love Granny Bouds xx
To Granny Bounds …what a lovely post .Made me smile and very wise words.Thankyou.
Thanks all. Just heard back from the consultant secretary. My bloods are all in the normal range and I have booked my appointment to review the brain MRI for Feb 10th. Slightly disappointed as I was hoping there would be some indicator in the blood work. Today I have noticed that my night vision in my left eye is very poor.
Thank you so much Granny Bouds!
My mother in law also has drop foot and she has learned to cope so well it’s not really noticeable now.
I also had a lovely chat with one of the local MS Nurses yesterday who was amazing. I just rang their office and left a message. They came back to me really quickly and are arranging for an appointment with them. She reiterated that understanding your own MS is key. In that one phrase it has made me focus less on what may happen and more on what’s going on right now. She also said that not every ache or pain is MS - it is probably something else. Not sure if that’s good or bad! I’ll go with good
So, onwards and upwards - it’s sunny today so i’m heading out of the house to enjoy it even if it is a bit chilly
All the best, Mandy
So had the meeting with my consultant to review my Brain MRI. The scan was completely clear. No tumour, lesion or white matter. His view is that MS would be unlikely with a completely clear scan. He is leaning towards there being no underlying condition and directed me to Neurosymtoms.org website. He is happy tp perform additional tests (spine MRI and Lumbar) but suggested I give it another week or two to see if I start to feel better (I find this extremely unlikely but he assured me it happens).
Separately I am having an appointment at the hospital to conduct more in depth testing into my double vision. I am due back at work on Feb 18th. It is fair to say I am completely in Limbo!