Not sure how to respond to this, on the one hand its great news that your brain scan is clear, on the other hand limboland is a difficult place to be. How do you feel about going back to work? Do you think you could manage it?
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Thanks Cookie
If I can get my eye sight fixed I would like to give it a go. I am wondering if the eye issue is contributing to the brain fog (probably wishful thinking). Not ideal being in limbo but it does give me a little bit of comfort. I have been getting a lot of pressure in my head at night so it is nice to at least rule out the brain tumour. I will look to see how things go over the next couple of weeks before arranging the spine MRI and lumbar.
kind regards
Jonathan
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Hi All,
I find it somewhat therapeutic to document my journey/progress. I am still very much in Limboland. I have been off work since the beginning of the year and I am currently signed off until at least the end of the month.
I left my home in London when I got ill and moved back in with my retired parents. I always enjoyed my life as a batchelor but soon discovered that being really ill and living alone at this dark depressing time of year was going to do me no good.
As mentioned above I am in Limboland with the brain scan and blood work coming back clear/normal. My next step is an appointment with an eye specialist on February 21st to investigate my double vision/dry eyes. I have booked a provisional appointment with the optician. I am hoping at a minimum the eye specialist will give permission to the optician to build me pair of glass to bring the double vision back in line. I have spoken to the optician and it normally only takes them 3 or 4 days to build the glasses. My neuro is keen to be kept updated with results of the eye appointment but we agreed not to do the lumbar at this stage. My neuro has told me that apparently he sees a lot of people with similar symptoms who just get better without treatment. I have to say that seems very unlikely to be but I guess he is the one that studied at Cambridge.
Over the last week I have made some changes. Previously my typical day would see me sleep in until mid-morning come down stairs and then spend most of the day trying to watch (double vision) day time TV (Homes under the Hammer and Wanted down under being my favourites). Over the last week I have changed my routine. I now get up early walk to the train station and make the short journey to my nearest town shopping centre where I set-up camp in Starbucks. I spend time reading a book and reviewing my office emails from my lap top. A bit silly but it really has helped my morale making me feel like I have a bit of a purpose again. It has also helped feeling the energy of having people around me.
Over the last couple of days I have noticed an improvement in my brain fog. I do not feel as fatigued and have much better ability to focus/concentrate. Previously I would be reading something but after a few seconds would loose my train of thought. This has been a big boost and has given me some hope that I could return to work in the not too distant future. With the way my head was previously that just did not seem like a possibility.
Unfortunately all of the other symptoms like the nerve related tingling/shocks/burning/cold sensations remain. My biggest issue at the moment is when a lay down to go to sleep at night I get tension headaches. They are not painful just extremely uncomfortable and make it very difficult to drop off to sleep. What is strange is when first wake up at say 06:30 and I am laying in the same position the tension headache does not come back which I just canât understand. I am wondering if this is connected to the double vision forcing me to focus a lot more during the day resulting in a headache at the end of the day. knowing that the brain scan is clear has given me at least the comfort that the tension is not being caused by a tumour.
My next aim is to start doing some exercise. I have enquired about doing to Pilates classes. I have hoping that might also have a positive effect.
Kind regards
Jonathan
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A really bad couple of days unfortunately. Seems to be an increase in the tingling and twitches and have also started to get itching on my legs. I am also starting to have trouble with my right leg. However, what is keeping me up right now is that I have now developed sensation in my mouth. Almost seemed like my jaw was about to lock up. It seems to be linked to the tension headaches I get when I sleep. I am worried about putting my head back on the pillow.
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I had optical nueritis when i first started my journey totally missed by GP.
this is my journey if your interested.
https://livingdailywithmultiplesclerosis.com/2018/03/04/the-beginning/
My lesions were on my spine. although i had stuff on my brain the radiologist dismissed them as my age not demylinating lesions, which now i think was just lazy and bogus.
the point is you got out and you felt better. keep doing that as being isolated in your own head is not good for you i know that.
whilst you are you just think about the stuff going on.
double vision can scary but it can be down to things like blepharitis or just plain dry eyes. I get dry eyes, and i use Hycosan Extra which my opthomalgist recommended i use. It helps double vision as i have some after my last attack of ON but its not severe.
I find the hycosan helps my eyes thats for sure.
good luck with your eye appointment. It is all scary but it seems when you got out you felt better. your depressed and therefore taking charge was very brave of you.
I always said if i had MS it would show itself and it did sadly, i wish it hadnt lol.
xx
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Hi Jonny, have you looked into TMJ I suffer from this and it gives some of the symptoms you are describing particularly at night because I clench my jaw in my sleep, I now wear a bruxism guard which helps. The tension from clenching the jaw can cause the headaches and can also give a lock jaw feeling. May be worth a look into.
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I read through your blog and it really hit home. A lot of similarities with symptoms.
I also shed a tear with some moments in the blog, particularly with your loss of loved ones.
Just wanted to take the time to say thank you for sharing, I found it an interesting and emotinal read. xx
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Thanks Crazy Chick. It was a difficult night be I got through it. I have actually already read your brilliant blog. It is so good to have this platform to interact with people going through a similar experience.
Regarding by double vision I do have dry eyes but I have the rarer binocular double vision so the vision is fine out of each individual eye and only doubles when both are open. From the research I have done this almost certainly has to be damage to the nerves around the eye muscles.
Fortunately company has been great so far in terms of my management and the support I get through private healthcare and the employee assistance programme. I have a call scheduled later today with one of the programmes counsellors.
Hopefully the weather picks up for the remainder of the week!
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Thanks. That this develops into TMJ or TN is my big fear. I keep on thinking to myself that I canât surely be that unlucky. I would just love to know what is causing this pressure to build in my head and then why does it tend to come to the fore when I go to sleep and why is it not there in the morning when I am laying in the same position. Very strange.
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Hi jonny, I also started suffering from headaches, shortly by seizures, which coupled with my other symptoms over the last few months is what prompted the urgent mri last week. I also however had a clear mri report back to my GP, however himself and neurology havenât taken MS off the table. I feel rather in limboland but Iâm now terrified of having a headache as I tend to have a seizure within a few hours of having one. I know headaches arenât common with ms but I do wonder if they can be associated some how? I hope youâve had better luck with your eye specialist. I have an appointment with the optician on Wednesday but now wonder if there is any point in doing it before the 6 months.
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thank you Lsly i wrote it to hope it would help others with this awful journey. It has been hard still is. i want to write again i have written a ton of stuff lol. even stories. No idea where they came from. god takes away in one hand and gives us something else and mine seems to be the ability to write. xxxxxx
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seems something has happend jonny316. can you remember anything going on. I always think the answer is in the past to be honest it was with me brazil.
do you fish or walk or anything have you considered Lymes as this can affect your eye sight too and cause neurological damage. Even something silly you may not be aware of feeling rough thinking it was a cold or flu could have been a virus which caused a systemic disorder which in itself can cause binocular vision issues, and some do attack us in the strangest ways. its like you have to become a detective. if its nerves then something has or must have happened. Hey i would go back to childhood too. did you have any really bad child hood diseases. I had hepititis at 7, and also later had to have my tonsils out as i was so sick with it, I had an infection in the 80âs the doctors were convinced i had brucellosis of cows milk as i lived in kenya and had drank some fresh milk but it came back negative but it can do that, so on and so forth lol. 3 major operations and other such things lol. its amazing how much battering our bodies can have.
I paid to see Dr (removed by moderator)at breakspear clinic and they did a ton of blood tests, found i was still carrying an epstein barr virus which although not present was still active, and another nasty virus beginning with C I think lol. jeez never knew i had them. who knows which one was responsible for triggering my MS. she actually gave me a differential diagnosis of MS but because she wasnt a neurologist my doctor NHS wasnt interested. but she was spot on.
I know how hard it is to keep optimistic, BUT i believe you will find out what it is. I didnt care what it was just wanted to get well but alas wasnt to be.
BUT you have the evidence there of something attacking your nervous system, its just finding out what it is.
I hope you do really but stay active dont let it get you i know we have to fight. xxxxxxxx
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Hi Jonathan,
How are you getting on this week? Have you managed to get out and about a bit or have the symptoms prevented that? Any news from the MRI you had or is it too soon still? I hope you get some progress at the eye Drâs on Friday. I had my 4 week review with the ophthalmologist yesterday. They did strength tests as well and said my problems are definitely neurological. I am effectively discharged from their care (just need a 12 week review to see if my vision improves, see if my field gets better and the colour blindness goes). I did get to ask them loads of questions which was good, so make the most of your time with them on Friday. They managed to rush things through a bit and Iâve got my MRI on the 5th March and Neuro appointment expedited from 5 months 6 weeks (30th march) which is great!
Hope the headaches have lessened and some exercise has had a positive effect.
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Hi there
I got out today for a few hours but have not been great these last couple of days. Will see how the eye exam goes on Friday before deciding next steps. My MRI was all clear. The Neurologist hinted at FND but I have no confirmed diagnosis. Good to hear that news about your MRI
kind regards
Jonathan
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Hi
i went through a very stress incident in November which is a possible trigger. Have been extremely fortunate health wise before
kind regards
jonathan
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Hi All, Quick update. On Friday I had my hospital appointment with the eye specialist. They could not find any evidence of nerve damage. The technical explanation they gave me for my double vision was decompensating esophoria. Basically they said stress and anxiety can cause the eye muscles to get confused and stop working properly. The good news is they fitted a prism to my glasses to bring my vision back together. To complicate matter I need a different prism for near and far. Good thing Specsavers did two for one 
This raised my spirits a little bit as I was able to properly watch the sport this weekend for the first time in months. I am pushing my Neurologist to arrange the spine tests to rule out MS. I am beginning to think that I donât have an underlying condition just the symptoms consistent with MS that have been triggered by stress/anxiety. I have nothing in my bloodwork, nothing in my brain scan, my vision issues were no ON and I did suffer at stress related event in November which my symptoms began shortly after. Whether that is a good thing or not I do not know. Now that I have an artificial solution for my eyes my next symptom I am trying to tackle is my Jaw. I have undiagnosed TMD/TMJ and I would describe the pain and discomfort as bordering on chronic. Every time I go to sleep I get a tension headache in my forehead which I feel travel down my face into my mouth and then my jaw starts to stiffen. The first couple of nights it happened was pretty scary. Quite often an ache and heat pain will accompany the stiffness. I can hear my hinge joint in my jaw pop and I get a tingling sensitivity in some of my teeth. I have booked in to see the dentist on Wednesday. My limit in terms of walking at the moment is about 10 minutes before I start to get a stiffness in one of my knees and cramps in my feet. I noticed today my arms also went week for an hour or so. I seemed to have lost some function in my left hand. I ma dropping things and struggling to pick crisps out of the packet with it. I am trying to take a sensible approach and not push too hard. I shaved off my beard today which I have been growing since I was signed off work too months ago. I notice that I have lost weight which seems impossible since I have been averaging only 10 minutes walking a day and have been eating fairly normally. I spoke to a counsellor last week (arranged through my work Employee Assistance Programme) which helped and I hope to do an in person session before the end of the week. Another thing I would recommend is the CALM APP you can purchase through the Apple store. I have been meditating every day and it really helps me (much to my surprise). The sessions only last 10 minutes so easy to fit in. They also have sleep stories read by celebrities on there which are also good. I find the voices of Stephen Fry and Eva Green (former bond actress) very relaxing. I spoke to my boss and all things being equal I will return to work next Monday for only a couple of hours in the afternoon. I have found a bus that picks me up just outside my flats and takes me to a DLR station and one of the DLR stops is attached to my office so I can get to work with minimal walking. It will be good to see people again but I am sure I will be pretty nervous on the day returning after 2 months. Tomorrow I am going to get a head and neck massage to see if it has any effect on the pressure build up I get in my head. I hope all of you have better weeks! Kind regards Jonathan
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HI that all sounds positive Jonathan. It could well have all been triggered by the stress event you mentioned. I always think its best to go back and remember things that happen as they can be a key.
Lets see how it all pans out for you. At least you have sorted your eyes out which was really bothering you.
give work a try I truly hope everything settles down for you. weirdly enough i was going through some old files i had on my extra storage unit for my computers and found a letter i wrote to my neurolgoist in 2007âŚso it really did take until 2016 for me to finally be diagnsoed with PPMS.
2007 i was just seeing him and going through tests.
Like i have said if it is MS it will show itself hopefully for you it isnt that but something that will sort itself out. xxxxxxxx
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Hi
Significant update. My Neurologist has committed to a âworking diagnosisâ of FND. He is arranging a spine MRI expecting not to find anything. He will then refer me to Neurorehabilitation for psychological treatment and specialist physiotherapy
It does feel good to get this commitment with clear forward direction and should make life much easier with work, occuaptional health and any possible insurance claim for income protection should I not be able to continue working.
Thanks for all your support on this board. I will continue posting here until I get the MRI results back ruling out MS.
Kind regards
Jonathan
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Hi
A while since I have given an update. I heard back today that my spine MRI was clear. As a result based on the brain scan and blood work also being normal they have confirmed a diagnosis of FND. I am to meet up with the Neuro once COVID19 has died down to discuss treatment
i returned to work a few weeks ago and have been slowly building up my hours. I have had a couple of difficult days but I have learned to work around. I need to be disciplined with taking the odd break. Working from home for the last couple of weeks has made things a little easier.
Kind regards
Jonathan
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Best wishes Jonathan.
Boudsx
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