I think I have MS

New diagnosis and before diagnosis
1

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.

2

hi nat

well until your next appointment with your neuro you can try Vit B complex and Vit D supplements

ask for a referral to a neuro physio

good luck

carole x

3

Thanks Carole, I’ll look into it - although according to the blood tests, I’ve not got any deficiencies. Worth a try though. I just need to know, it’s getting me down wondering what’s going on with me

4

hi nat

my tingling feet responded to thiamine (one of the B vits)

its permanent now though and i’m dx RRMS

carole x

5

Hi Nat,

Your tightness/squeezing around the chest/back sounds like the ‘MS Hug.’ Don’t get carried away because it has MS in the name; does not mean you have MS. See ‘MS Hug or girdle effect’ http://www.ms-uk.org/index.cfm/symptoms

What interest me most are your constant headaches. Yes MS does cause headaches but they can be constant and very bad with a complaint called ‘Hughes Syndrome’ or sticky blood. This complaint also mimics other MS type symptoms and can show lesions on an MRI. See http://www.hughes-syndrome.org/

See if other symptoms ring a bell and get a blood test via your GP.

Good luck

George

6

Hi George, thanks for the link re the MS Hug - it has a lot of useful information, not only about the hug. Re the Hughes Syndrome though, according to the link you sent, this relates to a blood disorder - wouldn’t this have come out in the series of blood tests I’ve had? If not, should I be asking for a specific test?

7

Hi nat, I have SLE otherwise known as Hughes Syndrome and you have a specific blood test for this. It depends on which blood tests that were requested as to what shows up. I also have spms and had a head, neck and spine MRI. I would suggest you do not trawl the web but wri te down your symptoms and relate them on your next neuro appt’ Wishing you luck in your search for a Dx. Janet x

8

Hi nat, I have SLE otherwise known as Hughes Syndrome and you have a specific blood test for this. It depends on which blood tests that were requested as to what shows up. I also have spms and had a head, neck and spine MRI. I would suggest you do not trawl the web but wri te down your symptoms and relate them on your next neuro appt’ Wishing you luck in your search for a Dx. Janet x

9

Hello again :slight_smile:

Hughes Syndrome (aka APS, antiphospholipid syndrome, or sticky blood) requires blood tests that most GPs wouldn’t think to do as standard, but it is routinely tested in people being investigated for MS. Given that your neuro hasn’t mentioned MS, it may not have been done yet though so it would be worth asking, although as far as I know, if you had Hughes, you would almost certainly have been having headaches and you would have a history of thrombosis and/or embolisms and/or miscarriage. If this sounds like it could be you, then you should definitely ask for the tests.

I’m really puzzled as to why the neuro didn’t send you for MRI. I’m also very puzzled as to why he or she is dismissing the nerve conduction results if you have visible spasticity. All in all, it doesn’t sound like you are being taken as seriously as you should :frowning:

Lesions (white spots) in the frontal lobe don’t usually point straight towards any particular condition and it is also fairly common for someone in their 40s to have the odd white spot. However, it is not normal for someone in their 40s to have lesions and symptoms and the more the number of lesions, the more the warning bells should be ringing. Could it be MS? As the GP said, it’s possible, but while frontal lesions certainly happen in MS, they aren’t the lesions that are most commonly associated with it so I think it’s really important to keep an open mind.

I also think, if I were you, I would be pushing for a spinal MRI scan - a lot of your symptoms are consistent with spinal lesions. Perhaps your GP would refer you, since he’s been proactive enough to send you for a brain scan?

The problem with your eyes sounds like nystagmus or oscillopsia. I get the latter sometimes and it is absolutely horrible :frowning: I’m afraid I don’t know anything that helps with it, but at least you have a name to work with for now. Actually, if you are going to ask your GP about a spinal scan, you might try mentioning that someone told you nystagmus and tremor often have something to do with the cerebellum and asking if it might be worth rescanning there with greater resolution?

One final thing comes to mind: I know you say that your blood tests were all fine, but did you get your exact B12 result? The vitamin B12 blood test is not wholly reliable and (according to previous posts on here anyway) a figure less than mid 200s could be masking a deficiency that can cause significant neurological problems. Maybe worth asking about anyway?

Oops, I lied. This is the final thing! Please get a referral from your GP to get your eyes properly checked out by an ophthalmologist: there are walk in clinics around the country, but you need a referral to be seen. Eye pain, blurred vision and nystagmus is more than enough to warrant it.

Hth.

Karen x

10

Hi nat and Karen, What a twat I was, sorry about my post but my brain is totally fuzzy, so please ignore what I said and Karen thank you for putting my mistake right. Janet x

11

P.S. the filtered word was t*at. Janet x

12

Hi Janet and Karen, thank you for your replies. Karen after reading your description, I definitely don’t have Hughes Syndrome - I have 4 children and never suffered a miscarriage.

I’ve emailed the Neurologist – listing all the symptoms that I’ve listed here – in the hope he’ll bring my appointment forward and take my concerns seriously.

I guess I just wanted to hear know what the likelihood of it being MS is, in case I do have to wait a month for my appointment