Forum

Question for Anitra

Hi I found your answer to Zoe very interesting and helpful in able to explain to my hubby that this is my scenario . What I would like to ask is what finally clinched with the neuro. Did you have positive results in tests etc. Or was it thru on going development of your health over period of time. I enquire because I don’t know where i fit in. I had a clear mri over 18 months ago… Clear, blood test no help. But my situation with my legs has really deteriated I have a lot of spaticity just as you described and sensory probs. but none of the ON bladder probs or balance problems unless I’ve walked or stood too long, I am still on neuros books see him every 12 months I’ve gone from being a mad Zumba fanatic too walking slower than my 75 year old mother with bad hips in two years. So slow rather than rapid, I was just interested in your story hope you don’t mind me asking Jo x

Hi Jo,

No I certainly don’t mind you asking, though you could have PMed (private messaged) as I feel kind of self-conscious now.

But perhaps you don’t know how to use that feature?

Well, what happened with me is that although I’d had these weird, but on-the-whole not too drastic and apparently unconnected symptoms dating back years, I was NEVER referred to neurology. So I never had a neuro who either wouldn’t listen, or didn’t think it was MS. I just didn’t have a neuro full stop.

Nothing presented as a classic neurology problem, as I had mostly aches and pains. So I did have a rheumatologist briefly, who couldn’t find anything, but, to his credit, was absolutely convinced there was something wrong, and determined to get to the bottom of it.

BUT, when I returned for my review, fully expecting to get the same chap, I found out he’d been unhappy here, and left (nobody had told me), to be replaced by a much older consultant. The replacement had a completely different approach: diagnosed me with “wear and tear” (“unfortunate, at your age, but it happens”), and discharged me with advice to rest and take ibuprofen.

So, I convinced myself it could be nothing terrible, otherwise they would have found it, cursed my luck for having “wear and tear” so young, but resigned myself to having to “put up and shut up”, as there was really nothing anyone could do, and at least it wasn’t anything serious. Hence I managed to push it to the back of my mind for the next four or five years, at least.

That all changed one morning in early 2010, when I woke up and realised I couldn’t feel my feet. Not at all. I didn’t connect it with the history of aches and pains and mystery injuries at all - not at that stage. At first I thought I might have had a stroke, but as everything else seemed perfectly unaffected - I wasn’t slurring or anything, and even the feet worked - I just couldn’t feel them - I quickly dismissed that, and assumed I had a lower back problem. I did realise, by then, it was probably a nerve thing, but just suspected entrapment, or some sort of freak injury, and expected it to resolve over the next few days. It didn’t.

So then I got scared it was never going to resolve, and went to the doctor.

The doctor straight away thought: “Slipped disc”, which I was a bit surprised about, as I hadn’t been doing any heavy lifting - even shopping - in the few days preceding, and acquaintances who’d had it all said a slipped disc was absolutely excruciating. I hadn’t had this. In fact, if anything, I had less pain than usual (I now realise the pain circuits were down).

So off I went to a neurosurgeon (not a nerologist), with a view to finding the slipped disc, and possibly repairing it surgically. Had an MRI - nil found - not a slipped disc, anyway. Luckily, he was very on the ball, scrutinized the pictures carefully, and said: “Wait, I want to know what that is! If you don’t mind, I’m going to refer you to a colleague for a second opinion.”

“That”, as it turned out, was a spinal cord lesion, and the colleague he’d referred me to was an MS specialist. I think he knew it was going to be MS as soon as he met me, and deep down, I did too. It was the first time I’d really felt we were onto something, and I wasn’t fobbed off with stupid things, like: “It’s wear and tear”, or: “the shoes you wear”, or: “One leg is longer than the other.”

There was definite evidence, now, that I wasn’t OK.

The first thing the neuro did was order a more detailed spinal MRI, and a brain MRI. Uh-oh. Six holes in there as well! I said: “I’ve not been feeling very well.” He said: “Noooo, you haven’t, have you?”

Then it was the usual waiting game everyone has to play, of being 90% sure what it is, but still having to prove it. I declined a lumbar puncture, and had normal VEPs. Bloods, of course - but MS doesn’t show in the blood.

Six months later, I was scanned again, and they found new lesions - and that was it - diagnosed!

So yes, clear evidence on tests - specifically MRI. The delay was in not having the MRI for years and years, because until the loss of sensation in my feet, neuro problems had never been a suspect. I think, once I was in the right department - Neurology - things started coming together very quickly. I always felt they knew what it was, and weren’t fishing around in the dark.

Until being referred to an MS specialist, I’d never suspected MS myself. I did have a nagging feeling I was ill, but if anything, I’d thought I might have rheumatoid arthritis. If I’d known, as I do now, that MS was in the family (a distant aunt), it might have crossed my mind. But it hadn’t. It was quite a shock, but almost a relief that I wasn’t feeling rubbish all the time from nothing. I had begun to wonder if I needed a psychiatrist, rather than a rheumatologist or neurologist, so it was a relief to have something I could finally see, and say: “THAT’s causing it! It’s not getting older, it’s not being a wimp, it’s not health anxiety. It’s THAT!”

So I don’t know if my case really helps you, because obviously, I did have evidence - but only when someone bothered to look. I have in fact never had a clear MRI.

All I can say is that if it is MS, the truth will out eventually. For me, years of being told it was “wear and tear” or “silly shoes” didn’t mean it wasn’t found when the time was right. I don’t blame my GP for never having suspected MS, because there was nothing really that was a dead giveaway. A rheumatology referral was reasonable, in the circumstances - but of course they didn’t find anything.

I hope you do get answers soon.

Tina

x

Morning Tina thank you so much for replying and you obviously were not having a good night as your reply was so late! Sorry I have never used the private message I should have worked it out. It was very interesting as you say once you were in the right place it became fairly straight forward. I like you have had from young adulthood lots of health issues but I just thought well that’s me. In away it’s better because you were able to carry on without the burden of knowing. I too got up one morning too numb feet electric shock pain thinking I’d tweaked something in my back and it has declined from there. But that’s where the similarities stop as my mri was clear which is of course is good but nevertheless my ability to walk is becoming more and more difficult. I only see neuro once a year which I also understand and not unhappy with.mI do think like you it will in time show it’s self or resolve ( you never know) but I do feel that something is fundamentally wrong. You explained it so well to Zoe, I appreciated that. So I remain on this site as it is the nearest to what I’m experiencing and i don’t talk to others about what’s going on so it is a real help and is a tonic when there are ones on here so ready to help. Sorry to embarrass but I’m sure others would have been interested too hope your not too tired this morning and you have a enjoyable day Lv Jo x

Hi there Jo,

Yes I too think that Tina’s responses are very informative. There is definately a lot of wisdom there.

I have had clear MRIs then eventually something has been found. But in those days my symptoms were so mild that I think most people would have ignored them and not even gone to Doctor. I did have an MS-like attack in 2008 and then started to notice spasticity in one leg in 2009. This has gradually got worse but thankfully only one leg is affected.

I had radiation therapy for hodgkins lymphoma in 1990. In 1991 i got l’hermittes. My MRI, LP and VEPs were clear. I was told it was a side effect of the radiation and it got better. Then in 2005 I had numbness in left forearm. My MRI was again clear. Then the attack in 2008. Didnt have an MRI as MRI in 2005 was clear GP thought it was unnecessary. Eventually had on in 2011 as foot drop was getting worse. Basically I have been dx with delayed radiation damage. although I have seen a neuro who disagrees even though couldnt come up with another possibility.

I am no expert but you would think if the symptoms were bad then at least something would show up on MRI if MS was the culprit. For someone with very mild symptoms then it MS may not show on scans initially.

There are some conditions which cause spasticity(mostly in legs) which are not MS and have clear MRIs. One of them is spastic parapesis (sorry not sure of spelling). One of the members on here Poll/Boudica has that. She had been initially given a DX of PPMS but after 7 years of worsening symptoms and still nothing on MRI or LP her dx was changed.

There is also another condition called primary lateral sclerosis (PLS) which involves the upper motor neurones only, causing mainly weakness/spasticity in the lower limbs. Bladder, bowel, speech, vision are uneffected. MRIs with this are clear too and both limbs are effected usually the same.

There are no definate tests for these just a matter of looking at symptoms and picking the best fit. Mt dx may end up being MS, if lesions are founf outside the area of radiation I got. I just have to content myself that I have the one with the best fit at this point in time.

My neuro has decided to give me the baclofen pump for my spasticity. He said they had just put one in a lady with a spinal cord injury and it has removed most of her spasticity and she is walking very well now. I just cant wait to get it now.

Take Care

Moyna xxx

I can relate to what Tina said I started going to my gp a year and half when my legs started to give way, gp put it down to weight and wear and tear of cartilage which was strange I had to push him to get X-rays done. They showed minor artharitis wand my vision was going bad went to my gp he told me to have a eye test so I did optician referred me to a ophthalmologist they checked me and referred me for a 2nd opinion. So he said he thinks it’s caused by a auto immune condition been under his care since September so I go back to gp walking got bad by this point and I told him it’s so bad he tells me to go a and e. I did months earlier they checked me out but couldn’t help me and he wrote to my gp useless gp worse I ever had after a year of struggling I changed gp new one is great referred me to neurologist after running tests. My neurologist is a ms specialist lovely guy he’s sure it’s ms or a slipped disc but he doubts it ms doesn’t run in my family I asked my mum, my MRI showed inflammation and I need a LP and vep. But I am wondering when you said numb feet if that’s how I started, 2 years or do I got out of bed and I had so much pain in my heels after 6 months it eased so I thought I was ok and carried it as normal I don’t feel my feet much just tingling if I though I feel them they are cold a lot to begin with it was just loss of balance which has made me housebound now, then bowel/bladder fatique I’m doing ok just desperate for a diagnoses which should be soon. Hope your all well x

Hi Jo, I was gonna reply telling you about my story and see our Moyna has mentioned me.

Has hereditary spastic paraparesis been mentioned at all? (HSP) I am now diagnosed with it, but with idiopathic in front of the sp bit, instead of hereditary. Idiopathic means the cause isnt known.

I was totally gobsmacked when I first heard the words…eh? what? and wtf came to mind!

Altogether, I had 4 MRIs, 2 LPs, 2 EMGs, oodles of blood tests and so many things were ruled out…but PPMS floated in and out of the picture for many years, even though none of these tests ever hinted at PPMS. Yet my clinical presentation was very PPMS like.

I have no known relatives with HSP, but I wasn`t brought up by my stepfather and lost touch with his side of the family.

Having said that, there is a possibility that the gene mutation actually began with me!

If you`d like to learn more about HSP, just google it in full, eh?

PM me if you wish.

luv Pollx

Hi all, thank you for your replys they are all very helpful in building up understanding. I googled poll and what I read did fit very well with my situation. But I couldn’t concentrate properly as struggling today with my legs tonight I’m wriggling all over the place, so will have a better look tomorrow as it takes a bit of reading. I have read your posts many times you seem a very positive and realistic person which is is what I aspire to be in my new set of circumstances. Hope you all get a reasonable nights sleep Jo x

Just peeping in here to say that after having suspected MS for over a year, I have finally been diagnosed with Functional Neurological Disorder after all my tests, including MRI, came back clear (MRI was ‘within normal limits’). I’m more than happy to get PMs about FND if it might be helpful. I’m still using this forum because I’m not 100% convinced yet that it isn’t MS - the MRI was a full scan but only T1.5 and I’ve not had an LP. Best wishes to all :heart: