Forum

Might I have MS?

Hi!

Newby here, looking for some advice from any kind people who may feel able to help.

About 18 months ago I found I started to have problems with my legs. Over the months this has worsened. I find that, when I wake up in the morning, I’m absolutely fine but after a while (it can be anything from a couple of hours to about four hours later), I start to find my legs becoming “heavy” and not going exactly where I want them to. It’s hard to describe. By late afternoon, I need a stick to help to keep me on track and, by the evening, going up and down stairs becomes quite a challenge. The difference between the way I walk in the morning (normal) and the way I walk by the evening (wobbling around everywhere, needing a stick, struggling with stairs (totally unable to go down steps unless there’s something to hold on to), kicking things which I hadn’t been aware were anywhere near my feet, tripping over, catching feet on furniture, struggling to balance, etc) is extraordinary. I saw the GP about this, and was sent to see a neurologist.

The neurologist organised an MRI scan which revealed what was suspected to be an acoustic neuroma, and a lesion in my spinal cord (thoracic region). There was also some atrophy in both parietal lobes. I was booked for another MRI scan at higher resolution with contrast a few months later. Despite the fact that my symptoms were (and are) continuing to worsen, both the lesion which had been thought to be an acoustic neuroma and the lesion in my spinal cord had disappeared at the time of the second scan. The neurologist prescribed me a vitamin B tablet (I wasn’t told why, but was told it might help), told me I’d have a routine appointment come through in six months’ time (which never arrived), and to get in contact if I noticed any major changes. No diagnosis was made. Unfortunately, no full medical history was taken either. The neurologist gave me a neurological examination at my first appointment, confirmed that something seemed to be wrong with my legs, and arranged for the MRI.

Friends (including a couple of medics) have told me that my symptoms sound like those of MS - about which I’d previously been quite ignorant - and, upon reading forums (fora?) such as this, I’m starting to think they may well be on to something. As well as the mobility problems, I do have several other unexplained symptoms, which include the following:

Facial pain on the left hand side, which goes from just below my nose up to just below my left eye. This ranges from an annoying tingling to a stinging, burning sensation. It comes and goes, but when it comes it tends to hang around as a daily problem for several weeks or more. It’s been away for a few weeks, but has returned today with a vengeance. It first started a year or two ago.

Tremor. Initially intention tremor in my left arm, this later spread to my right arm. I then developed a postural tremor (both sides). The tremor has been absent for several weeks, but both postural and intention tremors have returned over the last few days, especially when I am anxious. This first started a year or so ago too.

Problems with spatial awareness. Not only being increasingly unaware of exactly where my feet are when I’m walking around (which is hard to describe; I hope somebody here might understand what I mean), but knowing exactly where things are when I go to reach them. Also knowing where the front left hand corner of my car is in relation to the hedge when driving! This seems to have crept up on me slowly over time.

Constipation. Although stools aren’t hard (sorry if this is too much information!), after the initial bowel evacuation, it takes an age for everything else to come through. I could quite easily sit on the loo all day! I also find that I often need to race to the loo for a pee and that sometimes nothing comes. Again, sorry for any surplus and unwanted information!

Laryngopharyngeal reflux and laryngospasm. This has recently been diagnosed, but with no obvious cause.

Itching. All over my body, but especially scalp and ears. It drives me mad! It also comes and goes. Medical investigation into my itching scalp a few years ago revealed no obvious cause. No medications have helped. I’ve had this for many years and have often wondered if there’s a neurological problem due to the fact that, generally, it happens in symmetry. If the front left of my scalp itches, say, then the front right tends to too.

Hearing loss. I find myself increasingly struggling to hear what people are saying to me, especially if others are talking. My party trick as a teenager was to be able to listen in and keep track of the conversations on several different tables. Nowadays I struggle to keep track of the conversation with those on the table at which I’m sitting, let alone trying to hear what’s happening elsewhere. I also get the occasional problem with tinnitus.

Eyesight. My brain stopped using my left eye properly in my late teens. The reason was never explained to me. I’m aware that it still works (I can see things if I move them in front or to the left of the eye), and it still works (but it more-or-less unuseable) if I close my right eye. I’m short-sighted in my right eye. My left eye is neither any good for close up or for distance. An optician’s examination recently revealed a pronounced anisocoria (which is not usually present in me), and that my pupils were slow to respond to light. He asked me if I had any neurological problems, and gave me a letter for the neurologist with his findings. The neurologist took a look at my eyes and said they seemed ok that day.

Dizziness. This comes on later in the day, too, as my legs start to misbehave.

Tightness in intercostal muscles on my right hand side. I’ve had this on and off (but mostly on) for a year or so now. This feels very much like the boa-constrictor effect I’ve seen mentioned in articles about the MS hug.

Thoracic back pain on right hand side. I developed this in my mid 20s (I’m 40 now). I tried everything to get rid of it (physiotherapists, chiropractors, rheumatology, pain clinic, pain killers (including the horrible Tramadol)), but nothing worked. Although a couple of theories were put forward (neuralgic pain, pain-spasm-pain mechanism), nobody ever managed to come up with a diagnosis. One morning in 2006, that area of my back tingled instead of causing me pain. It tingled for a couple of days, and then both the tingling and pain had gone. They stayed away for a couple of years, until the pain returned. It’s now a fairly constant part of my life.

Dislike of heat. Like those with confirmed MS seem to find, heat seems to make my symptoms worse, and makes me feel “rough”. My idea of hell would be a really hot bath!

I’m sorry to have waffled on at such great length, but I’d be really grateful for any advice. The neurologist (who doesn’t specialise in MS) didn’t seem terribly interested in me, didn’t take a full case history, and, with not having had the appointment come through, I feel abandoned without a diagnosis, without treatment, and without knowing what is happening to me, though I’m fairly certain from what I’ve read that it’s MS. However, I’m not medically qualified, and am aware of the inherent faults with self-diagnosis.

Any advice will be gratefully received. Thank you.

hi mr wobble

you should push for answers

ask your gp to refer you back to neurology, if possible to a different neuro. you have a right to choose the hospital.

you have a whole load of sensory problems (better not to self diagnose cos the docs dont like it)

i relate to a lot of your symptoms, especially the hearing thing - sensory overload

its a sh*t thing to be pleased about but i was pleased to get dx

good luck and i hope you get some answers soon

carole x

Hi and welcome,

It does sound very strange for lesions to completely disappear. I am not a neuro but I didnt think that was possible. Never heard it mentioned on here before. Since your symptoms are getting worse I would be wondering if the two pictures/scans were both actually of you. Mistakes can be made in the medical professions, tests scans can be mixed up in busy hospitals. In my own case in Oct 1989 I was being tested for hodgkins lymphoma. I had fluid removed from the swollen gland and blood tests done in Guys Hospital. They came back completely clear. We went out to celebrate etc. In April 1990 I went home for easter and told my Mum that I still felt really unwell and the night sweats were continuing. My GP had washed his hands of me because all the tests had been done etc. My Mum got me to see a friend of hers at the local hospital. His opinion was that the swollen gland should have been completely removed and tested. This was done and low and behold hodgkins disease had been diagnosed. In the October I was probably only stage 1 by April it had moved to stage 2. If my Mum had not got a friend in ‘the know’ I dont know if I would be here today! In my opinion we need to be actively in charge of our own health.

I would recommend that you go back and ask for another MRI.

Hope you get sorted.

Moyna x

Hello and welcome :slight_smile: Your symptoms are certainly found in MS (although I’m not sure the extent of worsening from morning to evening is wholly consistent), but there are also quite a lot of other things that could be going on so I would recommend keeping an open mind. It is very poor practice for a consultant not to take a medical history :frowning: In your case, it appears to have led to you not getting the correct level of investigation and you definitely need a second opinion. Vitamin B is all very well and good (it helps the nervous system), but unless you are vit B deficient, it’s only a “nice to have” and may do absolutely nothing for the underlying condition, which of course the neuro failed to determine! Lesions can come and go on MRI so that doesn’t tell us all that much I don’t think apart from perhaps throwing some doubt on MS as one would expect at least some lesions to have hung around given how established and varied your symptoms are. The parietal atrophy suggests (perhaps!) that whatever caused the lesions to come and go has been going on there for some time and it has led to some loss of tissue. The parietal lobe is crucial for spatial awareness so this atrophy will almost certainly be behind your problems with this. Have you been prescribed anything to help with your symptoms? If it’s MS, or similar, then there are several that might help. A lot of GPs are reluctant to prescribe without a diagnosis in case they make things worse, but it’s worth a conversation with your GP because if he/she won’t prescribe without neuro approval, there is a more immediate need for that second opinion. Not sure this has been a whole lot of help, but I hope the fact that we think you need to see someone will spur you on to insist on a second opinion. I would also advise that you get your GP to put your history (as you’ve described it here) in the referral letter. Karen x

Thanks for your helpful suggestions, which are much appreciated.

I, too, wondered if there was a possibility of two scans being mixed up. I also wonder if the second scan was merely of the two problem areas, and not the whole brain and spinal cord the second time. I don’t know the procedure for MRI scans. Would they have used greater magnification and dye the second time to view my whole brain and spinal cord, or just to view the two hot spots which the neurologist said needed investigation?

I decided a couple of days ago to write to my neurologist along the lines of my first post here, listing symptoms of which the neuro is unaware, due to the lack of taking a full case history. Do you think it would be better to continue with this neurologist and see what happens once I’ve written in with all of the symptoms, or to ask to be referred to a different neurologist? If I stick with the original one and have another appointment, I will definitely ask for a second opinion if no diagnosis is made. It’s quite distressing to be in limbo, gradually getting worse.

I’m receiving no further medication apart from the B vitamins. Interesting to note Karen’s thought that this seems to have been going on for a long time. I wonder if it caused me to stop using my left eye in my teens.

Once again, thanks for your friendliness and good advice, and for your support. I appreciate it.

I think it’s a good idea to write to the neuro, perhaps along the lines of “Sorry, I should have told you…” rather than “You didn’t ask…” so things stay friendly. Even if he doesn’t act on it, it will be added to your file so it will be on record. There’s no way of knowing what the second MRI consisted of without looking at the images. You could get a copy of both on CD by asking the MRI department. There is usually a charge for this (about £20). If you can’t work it out, you can post the info here and I can help. Since you are writing to the neuro anyway, you could always add a paragraph about what they could recommend to help with your current symptoms. Kx

Thanks, Karen, for your further excellent advice. Sorry to ask yet another question, but would the CD of the images also come with a copy of the radiologist’s report, do you think? The images wouldn’t be of much use to me, I guess, but the findings of the radiologist who read them probably would.

Wobbly x

No, the report wouldn’t be on them, but you can get a copy of it by asking the hospital (or your GP, if he/she has a copy). A word of warning though: radiology reports aren’t usually very detailed. Kx

Thanks again!

I only got to hear about what the first scan had revealed due to an appointment with my GP, who gave me a copy of the neuro’s letter to him. The neuro had only told me that there were a few things noticed in the scan which needed further investigation, but had been specific with the GP. I have felt rather left out of the loop by the neuro.

I very much appreciate your support and kindness. x

Mr Wobbles; may I ask how old you are?

Your symptoms mirror mine, apart from the sight/sound issues and facial pains. I was diagnosed last week with PPMS, after a 6 month wait. I had positive c-spine and brain mri but negative lumbar puncture. My worsening symptoms, all movement/balance/spatial/coordination like yours, go back over 6 years!

May I suggest you keep a diary, including retrospective elements, and show this first to your GP and then to the neuro at your next appointment.

Hi Clucker Pigeon!

I’m at the age where life is meant to begin, but it’s starting to feel rather the opposite.

I think your idea of a diary could well be a good one. Thank you for that suggestion.

I think I have MS and am looking for some guidance. Symptoms started about a year ago, generalised cramps, muscle twitching. Within months I’d started to wake with extreme spasticity in both my hands. This is now also present in one of my feet. I have tremors in both hands and have started noticing it in my neck / head area. I have regular loss of sensation, sometimes pins and needles, but significant muscle weakness and pain. For a while I’ve experienced this tight pain across my chest and round to my back - the first time I got the pain I thought I was having a heart attack. It happens regularly now and feels like I’m being squeezed tight. I’m clumsy, constantly dropping things and I have significant cognitive dysfunction. To the point I’m terrified it being noticed at work. More recently (in the last month or so) I’ve started to experience constant headaches, waking with them and going to bed them too; and eye pain and blurred vision. Lastly, very recently (last couple of weeks) I have this thing, mostly when my eyes are shut - but it feels like my eyes are rapidly moving from side to side, which makes me quite dizzy. All blood tests are normal. EMG shows Fasciculation in my legs which the neuro put down to Benign Fasciculation Nerve Conduction Test showed de-nervation in left leg only (which the neuro put down to an operation I had a few years ago) These tests were 2 months ago and the neuro asked me to come back in 3 months. In the meantime my GP sent me for a brain MRI because I was so concerned at the cognitive decline. Got the results this week - a number of white ‘spots’ on my frontal lobe. Which my GP said are usually present in pensioners, I’m 43; or with people who suffer migraines, I’ve never had a migraine - in fact until very recently, I’ve never really suffered from headaches all that much; or are a sign of invisible strokes, for people with high blood pressure, I’ve always and still do have low blood pressure - in fact whenever I donate blood it always takes an age for them to get the blood out of me. My GP is sending the results to my neuro and asked me to specifically mention the above symptoms. I asked if it could be MS, his answer was ‘hmm, yes it could be’. A bit blazè given the weight of the question. I’m due to see the neuro again in a month.

Apologies, have I written on the wrong area? I think maybe I should have created a new thread??

Just noticed you! Yes, a new thread is best - saves getting lost in someone else’s :slight_smile:

I’ll reply properly on your new thread…

Karen x

For Karen, I’ve created a new thread Karen, thanks for your help. New thread is called ‘I think I have MS’. I look forward to your view / advice.