ll the symptoms but no MS

New diagnosis and before diagnosis
1

Hi,

I am not sure if this is the correct place to ask this but I can’t find anywhere else to ask.

18 years ago (I am m45) I lost all the senation or feeling in my right leg, no motor problems, just lost the feeling, I could stick a pin in it and feel nothing. I went to my GP and ended up with an MRI scan. This showed some scaring on the sclerotic sheath (I think how they put it) so I was then sent for a lumber puncture, which produced, as I am sure many of you will agree, the most horrific pain in my head!!

I returned to my GP for the results, obviously expecting the worst but she said that there were no prtiens in my blood which are normally present in someone with MS. So I carried on as normal and just got on with my life, then a year later I started to get a sensation on my kneck, like it was wet or hot or both, and I also started to get pins and needles in the fingers of my laft hand, which I still have. I went bak to my GP and he sent me for another lumber puncture, thanks Doc!!

Still nothing there. So again I just carried on with life. I have had different syptoms over the years but nothing that thankfully stopped me living day to day. I even took up running again with the higlight being in a 10 mile race in 2006 I think which I completed in 68 1/2 minutes, so obviously the medics were right.

But, for the last year or so I have had the sensation of electric shocks in my spine and legs if I bend me head forward, yep, Lhermitts sign. I just put “tingling in my spine and legs” in to Google and the first thing that came up was Lhermitts sing and MS. Every symptom I have even had and put in to google comes back with MS. I know you can google from a head cold to a brain tumor in 30 seconds but the coincedences are just too regular.

For information I once read in the news papers about how antiphospholipid syndrome. or sticky blood can give similar symptoms to MS, so I went to my GP again, had my blood check and the markers while higher than normal were not too high, I was not diagnosed with antiphospholipid syndrome.

So to finish, I am just wondering if there is anyone on here who has had a similar experience or knows of someone who has. I am going back to my GP in a couple of weeks to talk about this Lhermitts sign

2

95% of people with a definite diagnosis of MS exhibit oligoclonal bands on a spinal tap. This may sound impressive but so do 90% of people with Sub-Acute Sclerosing Panencephalitis and 100% of people with Herpes Simplex Encephalitis among other conditions. Positive spinal taps are indicative of an immunological response but they are not diagnostic for a particular condition. That 5% of PwMS do not exhibit oligoclonal banding means that spinal taps neither rule-in nor rule-out MS.

The test for ASP antibodies or Hughes Syndrome is I think again not definite. I think the only way to disprove this is to suck it and see; take 75mg of Aspirin per day. This is NOT a drug that can be taken without discussing it with your GP. http://www.hughes-syndrome.org/

L’Hermitte’s is associated with a number of conditions including arthritis, cervical spondylosis, disc compression, pernicious anaemia, tumours and multiple sclerosis. In many cases, the cause cannot be found.

You say nothing about having an MRI scan. I recommend you ask for a referral to a Neurologist or if you can afford about £200 go see one private. Make sure any further tests; hospitalisation or drugs are on the NHS.

There is a long way to go as it could be things like Charcot, Marie, Tooth disease; Lyme disease; Sjogren Syndrome the list goes on but an MRI is the first requisite.

Good luck

George

3

Thanks George,

To be honest I have kind of just forgot about it over the years, well no I haven’t because that is not possible, but I have’t done anything about it, but I think it is time I went back to my GP, they can’t say I have cost the NHS a fortune over the years, I think I have only been there maybe 6 times in about 15 years.

So from your reply am I to take it that there is still no deffinate way to say that someone has MS? No blood test or anything like that?

Thanks for the reply George, much appreciated.

4

No definate diagnosis unfortunately, see http://www.mult-sclerosis.org/diagnosingms.html

George

5

There is no definite diagnostic test for MS. A couple of links for informations are:

http://www.nhs.uk/Conditions/Multiple-sclerosis/Pages/Diagnosis.aspx

http://www.mstrust.org.uk/atoz/mcdonald.jsp (Describes criteria to make an MS diagnosis.)

Your last MRI showed scaring, a positive LP would have been a second positive test but another MRI scan (as George’s recommendation) could show new scaring. That would probably be counted as confirmation of MS. I would guess (as a layman) that you had one attack confirmed by MRI, so a “Clinically Isolated Syndrome” (isolated, not multiple) and test evidence of a new attack is all that would be needed for a diagnosis of MS. (Of course, what results would be considered confirmation are dependendent on expert judgement.)

6

Hello, and welcome to the site

Things have changed a lot in the diagnosis of MS since you first got those tests. For a start, GPs are not allowed to investigate or diagnose (or rule out) MS. Only a neurologist can do these things. Also, an LP is not needed for diagnosis and the MRI criteria have been reduced and refined considerably. I have to say that your description of your symptoms and history are spot on for MS. This doesn’t actually mean that you have MS, just that in my completely unqualified opinion, it is very likely. In which case, you really need to see a neurologist to have things properly investigated.

The good news is that, if it does turn out to be MS, you have been living with it now for 18 years. Getting a label is not going to change that - it won’t know it’s now got a name! - so there’s no reason to suspect that things won’t continue much as they have been apart from the fact that you’ll have access to proper meds, treatment and support - which has got to be a good thing.

So please, when you see your GP, insist on a referral to an MS specialist. You can find the name of one near you by using the “Near me” function on here - look for the white boxes along the top of this page. Your previous MRI results + your history mean that you should see a specialist and not bother with a general neuro first so don’t let your GP fob you off. (Btw, “damage to the sclerotic sheath” means demyelination, which is what causes MS lesions.)

I hope it goes well.

Karen x

7

Hi all, thanks for the comments and information.

Rizzo,

This one of my dilemas, do I want to be diagnosed with MS? I am thinking about changing jobs at the moment and I have read some things on here about discrimination at work, it shouldn’t happen but we all know it will happen. But I suppose I should go and get it checked out. I will have an MRI scan even if I have to pay for it myself. I actually had a MRI of my head about 5 years ago, I was having problems with my eyes and I had an MRI scan (this wasn’t in the UK), no one noticed anything unusuall on the scan, and I have continued to have my eyes checked since then in the UK. I told the opthomologist about my investigations for MS but he said that the problem with my eyes is deffinitely not MS related.

One of the main reasons I want to return to my GP is because of my almost complete lack of bladder control!! Last night I went for a beer, I had 2 pints and as I was leaving I thought, I need a pee, but the place I am staying (I am not at home at the moment) is olny minutes away and I thought, ok I will check the time and see how long I can hang on, see if I could get back the appartment. I got back to the appartment reception in 3 minutes but I had to use the toilets in recption. And embarasingly there have been a couple of times this last month where I didn’t make it. I am not sure if this is just a male thing but even after I have been to the toilet, I feel like I need to go again 30 seconds later, but because there is no pressure on my bladder it just leaks out!! Not much but enough. Obviously I was thinking, 45, malle, protate problems. Which may be the case but this has come on so sudden. The Lehrmitts sign thing is pretty bad today, no pain or anything but it is different today. I have an appointment with me GP for 13th of August, lets see what happens from there.

8

Rizzo,

You mentioned vitamin B12 in a different post, can I just get this at the chemist?

9

Re whether or not to look for a diagnosis, I would say that it is overwhelmingly better to have a diagnosis than not. The Equality Act means that you don’t have to disclose your medical conditions to a prospective employer and that you can tell them after starting the job and that they have to support you and can’t change their mind about hiring you. Obviously it isn’t as straightforward as that all the time, but far better to have the law behind you when dealing with an employer than not - and that typically means a diagnosis. It’s also only possible to get a lot of meds and treatments with a diagnosis. Plus, of course, a diagnosis means knowing wtf is going on!

Re bladder - make sure and tell your neuro. Bladder problems are really common in a lot of neurological conditions so it’s important info. If it becomes an issue, you can go to a continence clinic - they can give you advice and help to deal with it. In the meantime, try and go regularly even if you don’t feel like you need to. Basically, if there’s a loo, use it; don’t wait!

Re vitamin B12 - most supplements are cheaper on-line. I get my D3 from amazon, my B12 normally comes from iherb.com in the US but I shop about, my B2 from whoever is cheapest when I need it (lately Holland & Barrett because they had an offer on). If you want to do something for suspected MS, it’s D3 that you should definitely be taking (5,000iu a day normally). There’s no evidence that B12 helps MS. It kind of makes sense that it might though because it’s involved in cell repair - so that’s why I take it; just in case.

Hth.

Kx

10

Thanks for the infomation, I will push for a solution when I get back home, I have a appointment on the 13th of August with my GP, clearly from what I have read on here a second MRI scan should or could nail down a diagnosis.

I didn’t know that I don’t have to tell a prospective employer about this, that is very useful information.