Limboland :(

New diagnosis and before diagnosis
1

Hey everyone,

I’m new to the MS Society, and decided to post on here because you all seem like lovely supportive folk!

I am a 21 year old male, not currently diagnosed with MS. I have only had the usual bloods/blood pressure tests etc. done along with an MRI of the brain/ears towards the end of last year.

It all started early last year when I just didn’t feel ‘right’, it’s difficult to explain. There was a certain ‘offness’ about me, but I couldn’t quite point out what it was. I started developing a general apathy towards things, mainly those of a physical nature such as exercising or going out (I used to lift weights on a regular basis). I didn’t feel I had the right ‘energy’ to do things that I would normally do. I also had random episodes where my mind felt extremely hyperactive and felt like I had to ‘escape’ from my surroundings for a few minutes; I almost CRAVE isolation these days!? I also had other minor problems that I didn’t really think about such as frequent urination, occasional mild tingling in my heels/toes, short bursts of hearing ringing in one ear (5 seconds or less) and fatigue.

I attributed these symptoms to anxiety as I was revising for difficult exams at that time and really wanted to try my best, so I presumed the stress had a part to play.

I gradually dismissed this idea of it being a result of anxiety as I could notice worse and more identifiable physical symptoms cropping up as I would exercise or take a shower. I felt like I couldn’t feel my arms and legs during exercise and would feel extremely lightheaded where I thought I would pass out (still the case today), and I felt wobbly and strange when taking a shower.

It became a real worry during last summer where I noticed some very strange and very scary symptoms when standing up. The best way I can describe it is the sensation of being in an elevator, that sudden jolt where the ground feels like it moves up and down momentarily. It is horrifying because it hits me at random times, especially when standing still (which is funny, as walking doesn’t seem as bad?). It is definitely more noticeable in the shower and has led me to use cool water instead. It doesn’t happen all the time, it doesn’t happen every day, but the symptoms have not subsided – it is easily the worst of my symptoms.

I also noticed some balance problems that could sometimes accompany the elevator feeling, which would require me to stand in a funny position when standing still, with one leg behind the other, or having to clench my toes/sides of my feet into the ground to maintain balance. I also feel like I have to ‘lean’ into things or rest my arm on something otherwise I would get a strange sensation in my legs like someone was gently tugging the ground under me, similar to the elevator sensation, leading me to want to sit down whenever possible. I can also have episodes of (sensory ataxia?) where I feel I am walking on a bumpy surface when the floor is quite evidently flat, or I am walking in the air or conversely where my legs would feel a bit heavier. They do not last long, anywhere from a day to three days is the most common. This is the most prominent and annoying set of symptoms I have by far!

My optometrist recently found out I had a corneal ulcer when I complained at having short episodes where I would wake up with a very painful eye that would be very watery and bloodshot red, that would go away in a matter of hours/a couple of days. I may have had reoccurring corneal ulcers three or four times if this is the case! Alongside this eye-related problem, there have been several times where it would hurt slightly to look in the corner of my vision, like my eye would be strained, and occasions where my eye would be red without any pain (I am almost certain this is optic neuritis).

Other mild symptoms that diminish relatively quickly is the sensation of smelling burning/cigarette smoke, a sense of ‘vibrating’ (more commonly when lying down), temple pain and a tight ‘rubber-band’ feeling around the head and sinus.

I am extremely sorry about this long essay, but I feel like you guys are the most appropriate to talk to about my worries, I really do feel like I’m lost in limboland. I feel like I’m alone in this struggle and all I want is a definitive diagnosis of SOMETHING just to prove I am not going crazy, these symptoms are really affecting my quality of life and there is no way this can be anxiety, even my GP agrees with me. I am seeing a neurologist very soon for the first time so I was wondering if there was any advice on how I should approach him/her, and if you guys have had any similar symptoms, especially with the balance/elevator problems and the feeling of feeling ‘off’ and ‘craving isolation’ as I cannot find much info about this :S

Thank you so much, this site has already been very helpful! :slight_smile:

2

Hi,

This may not be a help to you, because I am not currently diagnosed, but I can certainly understand what you mean about the elevator sensation. I dont have it all the time but I have had it before, its really disconcerting, but I have no idea what causes it. I can also recognise the feeling of vibration, again not sure what causes it.

With regard to your eyes, if I were you I would be asking to have my eyes tested for dryness - there is a test that can be done called the Schirmer’s test. The symptoms you describe with waking up with very sore eye etc. are very similar to mine. I have a condition called “Sjogren’s Syndrome” where the immune system attacks the tear glands of the eye, and leads to a very dry eye. In me,. that meant that when I woke, my eyelid would be stuck and often take some of the surface of the cornea with it ( a bit like if you get sellotape stuck on your lip and have to rip it off -or is that just me??!!). This minor trauma does not feel minor - its bloomin painful, but will usually heal in a day or two. This happening over and over again can lead to corneal ulcers. Optic neuritis would not make the surface of your eye red, but Sjogrens and other severe dry eye conditions would. In the meantime, I would suggest trying some over the counter eye drops/gel such as viscotears to lubricate the eye (if they havent given thid to you already with the ulcer). Don’t let the watering throw you off hte scent - excessive watering is often a sign of dry eye, it’s the eye trying to use another type of tears to lubricate, which ont work very well.

Interestingly, Sjogren’s syndrome can cause neurological and sensory issues, so it might be linked (that is the query with me -is it Sjogrens or is it something else).

The difficulty you may have, is that some of the symptoms you mention-like the elevator one- can be associated with anxiety, so it may be very easy for the GP to dismiss them. You dont mention what the outcome of your MRI was, so obviously much of how to proceed will depend on that. But the general advice would be to not mention to your GP what you think it is, but attend the appointment with a list of your main, most bothersome symptom (s) - avoid a laundry list of every odd little thing. Stay calm and explain what you have been experiencing, and let them do their job. I would be inclined to ask for a referral to ophthalmology about the recurring ulcers, as this should not be happening in a young man.

Anyhow not sure if that was any help, but good luck,

Leah :slight_smile:

3

I can’t really comment on whether your symptoms look like MS or not, all I can say is that yours are mostly different to mine but MS is a very individual disease, no two people with MS will have exactly the same experiences.

The best advice I can offer for when you see your neuro is to keep a symptom diary and take it with you - note each symptom, when it started, does it come and go or is it constant, if you had a symptom that you don’t have now when did it stop, note any triggers you have noticed. Don’t give a copy to the neuro when you go in, but use the diary to help you answer his questions. He is likely to want an MRI and maybe other tests before he makes a diagnosis. There are strict criteria for diagnosing MS, there are probably equally strict criteria for other neurological conditions, and your neuro has to be certain you fit the criteria before he makes a diagnosis. This is complicated by the fact that many neurological conditions have overlapping symptoms, so it isn’t always easy for a neuro to determine which condition a patient has.

Good luck and keep us posted.

4

Hey thanks for the responses so far,

I forgot to mention that the MRI’s showed no unusual activity.

5

I ‘get’ the elevator feeling too. Awful till you get used to it but you described it perfectly. When I use a lift, I get that feeling twice, once on the actual lift, and again when I get off :s two for the price of one, or, a double whammy. I hope you get sorted out soon. You’re a year younger than my son.id be devastated if my kids got this. Best of luck hunni. We are all here for you xx

6

Omg, I get that weird elevator sensation too. I actually forgot about it until you mentioned it. It almost feels like all of a sudden the earth has shifted but forgot to take me with it. Strange. :slight_smile: I’m not diagnosed either. Hope you get some answers soon, :slight_smile: