Feeling rather bewildered and miserable after MRI 'results' :(

New diagnosis and before diagnosis
1

Hello Folks,

I’m feeling pretty pants today after getting some rather unclear info regarding my MRI.

It’s hard to explain to others but I thought you folks on here might understand and help me get back on track.

I had my head and cervical MRI nearly two weeks ago. I received a phone message from the Neuro dept asking me to call them yesterday. I returned the call but was only told they couldn’t help at that time as my notes were being typed up and weren’t to hand. They told me to phone back in the afternoon which I did twice, but each time it just went to the answerphone. I left two messages but heard nothing more that day.

This morning at 8.45 I had a call from the neuro dept saying they were returning my call but couldn’t make out my name on the answerphone. I explained what had occurred the day before and that I hadn’t heard back and that I wasn’t sure why they had asked me to call them in the first place… The woman on the phone was pretty rude, at one point when I explained I hadn’t had my results yet she said “well whose fault is that? Not mine!” It was really weird I wasn’t having a go at her at all, I was just trying to politely find out what was going on. All a bit weird really. She said she had no idea why anyone had phoned and said they certainly wouldn’t give any indication regarding my results over the phone. She then said I was asking for my results far too early as it had only been two weeks. She told me to wait to hear from my GP and that was the end of the conversation.

Not the best start to the day as I was struggling with my 4 yr old son who has become very wise to the fact that mummy can’t chase him around the house to catch him to get him dressed and certainly can’t get him up the stairs to brush his teeth etc in the morning! My 6 and 8 year old can’t understand why mummy can’t walk properly in the mornings, I think my 8 year old is getting worried about it all. It’s not fair on them.

Anyhoo…less than 5 minutes later the same lady phoned again. This time she half apologised (I think - it was fairly mumbled) and said the MRI report was completed but the neuro had not signed it so it would not go to my GP until the end of next week as my Neuro wasn’t back in until next Tuesday. I asked again if she could tell me what was in the report she said I was to be sent for Nerve Conductivity Tests. That was the end of the conversation. I guess she hadn’t had a good start to the morning either today :frowning:

So here I am now sitting here felling pretty rubbish. I guess my MRI was clear which must be a good thing but I still feel so rubbish. I don’t know what to do or indeed if there is anything I can do. I think the conductivity tests are because I was having so much pain in my hands and feet. At one point the docs were strongly suggesting peripheral neuropathy but for some reason they decided it wasn’t that after all - I can’t remember why they crossed it off the list but they seemed pretty certain. When MS was mentioned, I read the info on this site and was not surprised they thought it could be MS - it was the closest match to anything else I had been told it could be. When I was referred to my Neuro he immediately said it was unlikely as I would have a very unusual MS with my symptoms - I was having a lot of cramps and sharp pains in my hands, my legs were very weak at times (to the point I could hardly support myself) and I was having frequent myoclonic jerks at lot at the time I saw him. I also have a constant tremor but I have had that for years. Does this sound like it could be MS? I don’t know. The Neuro said no way with the Jerks.

Worse still, and this sounds really stupid, I have felt better of late. The pains in my hands went, the jerks calmed down (I think they were often in response to the pain in my hands) and I had one week of awful cramps. Right now, I am fairly symptom-free but my god I am tired, I have honestly never felt this tired in all my life. I am sleeping so well but in the morning I am struggling to stay awake even driving the car etc. I wondered if this was some sort of MS remission stage? I certainly don’t feel right at all, but I don’t have the severity or regular pain like I had before. I do have days where I cannot walk well at all for stiffness in my legs and I still have the old tremor but my other symptoms have gone. I’d really appreciate an opinion on this. I daren’t tell the docs in case they discharge me - I don’t feel fixed yet!

I don’t know what to do next. I feel like such a fraud, I have had so many blood tests, reflexes and now the MRI and all have come back fine (I’m guessing the MRI is OK). If the nerve conductivity is OK too I’m pretty certain my Neuro is just going to put it down to some sort of lunacy or something! He isn’t very sympathetic at all and seemed very uninterested during our meeting. All the time I am really struggling with all this, I can’t explain to people what is wrong and it is hard to ignore the way I am feeling right now - I feel like I’m in someone else’s body ( a much older someone else who has abused their body for years!).

I thank anyone who has taken the time for reading all this - it must have taken some perseverance. I’d be so grateful to hear from anyone who can understand this. Also do you folks think MS is off the list now?

Helllppppppp…

Thank you

2

So sorry you had such a rotten response, it’s the last thing you need when you are feeling so worried about results! With your MRI scan I don’t think they would tell you the results over the phone either way. So you will need to see someone for that. Fingers crossed it is good news. I was dx in June, best way I have found so far is to treat each day as it comes and worry about the future when it happens. Whatever it turns out to be MS or not you still have to cope with the symptoms, lets hope things carry on improving. I am not sure that this helps any! It is still a worrying time. Hope you get some clear answers soon. Mish x

3

Hi Snorkle

I am sorry you have been messed around today. Its just not fair when we are all very worried about what is going on with our bodies. As for the woman you spoke to today, well she sounds like a right idiot! I definitely think you need to be speaking to her supervisor about her conduct today. Some people need a lesson in people skills to be in their job.

I picked up on the ‘jerks’ you said about, and that the neuro said it wasnt MS because of them. Well my neuro thinks I have got MS because of the jerks and tremor I have. I also have many many other symptoms too… Optic Neuritis in both eyes, back spasms, fatigue, urinal urgency, numbness, pins and needles, buzzing in various parts, my right leg doesnt seem to work very well and I tend to drag it along… etc. well you get the picture… I feel pretty much like Im about thirty years older than I actually am (Im 48).

Anyway, my point is that you need to go to your GP (or another in the practice) and make sure they listen! Your neuro is obv not listening so get referred to another. Its your right and hopefully you will find one who is supportive (there are some great ones out there!).

Its rubbish that some of us have to do all the groundwork, but thats how it is for many people.

Good luck

Paula xx

4

Hey Snorkle.

Just so you know, you are SO not alone, and everyone here understands what you’re going through. It is very hard to talk to other people about how you’re feeling, especially when your results keep coming back clear and you start to doubt yourself, and everyone you speak to makes comments like, “I think you just need to get more exercise”!

I was particularly interested in your post because your description of your woes sounds extremely close to my own. Primarily it’s the pain in the arms and legs/feet, and just like you it’s something that can be present for a week and then lift and leave me feeling almost fine for a week. That makes you start to doubt yourself too – “Maybe it wasn’t as bad as I thought it was”…

And just like you, tests keep coming back negative. I did mine the other way around though; nerve conduction tests first, then MRI. Both clear! Although I wasn’t given any contrast on the MRI as they weren’t looking for MS but for a nerve blockage in my neck.

I’m also in the same position as you in terms of feeling like MS looks like the closest fit, but not actually knowing for certain yet.

And we’re definitely all in the same boat when it comes to having to talk to grumpy receptionists! Honestly, I think all doctors’ receptionists are mean, but neuros’ receptionists seem to be a whole new level of horrid!

I can even relate when it comes to the kids; I have five of them, 10 yrs old and younger, and it does start to become difficult when you don’t want them to worry, but they can clearly see you can’t do something that you should be able to do.

One tip I have for the aches in your arms, and even your legs, is to try wearing an elasticated bandage - a ‘tubigrip’. It works particularly well for cramping pains as well, and I tend to find that while I can take painkillers that do nothing at all, an elasticated bandage sometimes takes away as much as 50% of the pain.

Don’t worry about the fact that your symptoms have faded at the moment. If it is MS then that’s what you’d expect. My symptoms did largely the same, building over about 6 months and then slowly decreasing over the next four months, and I too started to feel concerned about going to the docs and appearing to be ‘completely fine’. But then last week my symptoms came back for four whole days, at the same intensity as when they peaked at 6 months. And now I’m ok again!

I think if there is one key message I would give you it is to know that your feelings are valid, you’re not imagining the pain or the jerks or any of it, and don’t stand for any doctor telling you otherwise.

5

Hello from me too.

I am luckily out of limboland but can still empathise with how you are feeling at the mo.As you indicated folks on here do understand.

When you feel rubbish alot of the time it does all become a bit of a blur. I would recommend however that you do start keeping a diary of symptoms showing how long they last eg heavy unco-ordinated legs 4 weeks etc.

This will help the neuro when you see him to decide if they were part of a relapse.

As to you 8 yr old I know your not dx yet but the ms site do publications to help parents tell kids in a way they will understand. Whatever the reason for your problems it might be helpful to have a look.

Best wishes and I hope today is a good day.

Pip

6

The handling of the telephone calls seems “unproffessional” by the neurology dept (to put it as neutrally as I can think). I suspect they have, or had, a bit of a crisis and let it spill onto you. I would have expected the neuro to discuss it with you directly. The neuro is a specialist a GP calls on for uncommon problems that takes over with respect for those problems.

By what I’ve read your symptoms are quite common in people diagnosed with MS. I thought of Paula when you mentioned the jerks (spasms). When she posted about worrying if being still enough for an MRI scan someone else responded from a position of having had MRI scans and spasming. There are definitely others on here who have spasms. In fact they are an accepted symptom of MS

I didn’t get why you gather that the MRI scan was clear. I would have guessed that your neuro would hold off drawing conclusions until the results of all the tests they do (evoked potentials [Nerve Conductivity Tests]). That he seemed to be ruling out MS seems daft. That they are arranging Nerve Conductivity Tests means they haven’t given up yet. If you get on with your Gps OK, then talking it over with one may provide some insight and push the GPs to ensure (as well as they can) that they get some sense from the neuros and possibly change neuro.

Best wishes,
Jon

7

Hi again, just to say that that, you having felt better of late also could be part of a typical MS story. Early MS is usually RR (relapse -remitting ) i.e. having an attack which then the body manages to repair (somewhat or almost completely).

I identify with you feeling your body is someone older’s. I am trying to come to terms with being less capable than my 80 year father and when I stagger it just dosn’t feel connected to me properly (I guess the point is that it isn’t). My contol systems are probably disrupted (I am waiting for a neuro appointment for my latest symptoms, I was disgnosed as having had one attack - optical neuritis).

8

Thanks all for your helpful responses.

Thank goodness this site and all you folks are here.

I’m going to make an appointment to see my GP at the end of next week. Hopefully he will have received my MRI report by then. He’s quite helpful usually so I’m hoping he will be able to shed some light on what is going on at the moment.

I’m also going to start keeping a diary of things. As you quite rightly said Pip, everything becomes a bit of a blur after a while so I’m not going to be much use to the Neuro if I can’t tell him clearly what is happening. Thanks also for the recommendation about the publications which might help me explain to the children what is going on. I haven’t told many people at all what is happening. It must look very strange to the neighbours when some days I’m walking like a cross between a young Forrest Gump and frankenstein’s monster and other days I’m not so bad. The walking issue is a more recent development, really before that it was just cramps, pins and needles and, worst of all, the pains in my fingers and hands. It’s really hard to explain why I’m walking like it, my legs feel stiff and weak, I’m not sure if it is my feet or legs or what - something’s definitely not right, but I don’t seem to be getting enough info from the broken bit to my brain to tell me what is wrong. This probably isn’t helped by the fact the old brain seems to have given up on me and gone on holiday (somewhere nice I hope).

Yesterday I was talking to one of my clients who has been fairly badly disabled since birth (though she can still walk and is in her 70s). She is one of the very few who I have told I have ‘some sort of problem which gives MS type symptoms’ (what else can you say???) and we were having a bit of a laugh about it all really. 'Tis good to see the funny side of it all but maybe it’s easier to do that with someone who understands. I told her about the first onset of symptoms I had - it came on very suddenly you see. Each morning I would leap out of bed as I always used to and fall straight on the floor. I didn’t have a proper sensation in my feet or legs or something so I couldn’t stand up without support for the first 10-15 mins each morning. Things would slowly improve so I could stagger around like a drunk (a great look for the school run!). It took me two weeks to train myself to remember not to leap out of bed every morning or I’d end up on heap on the floor trying to work out how to get up. I’m pretty sure a lab rat or similar wouldn’t have taken that long to retrain itself!

Does that sound like an MS type symptom? It improved after about 4 weeks and just the hand pains and cramps remained (for a further 18 months). Then the hand pains dimished a bit and the myolonic jerks took over big time, coupled with terrible cramping pains in my arms predominantly on the right side. The jerks then wore off after about 6 weeks, the cramps went to the left side, then the cramps went almost entirely and I have felt a fair bit better for about 6 weeks or so . Now however, in the past few days I’ve had the hand pains occassionally and last night cramps in my feet and hands so maybe that is going to all start up again. Oh dear, I am falling to pieces!

Jon - I thought the MRI must be clear because they are doing the conductivity tests, I didn’t realise that was something they do to check for MS too. Neuro seemed pretty dismissive of it being anything. I don’t much like the thought of having all these expensive tests done if I am just a loony. My tremor was pretty bad the day I saw him and the nurse who was present seemed to think I was shaking because I was nervous - sooooo embarrassing. I was feeling pretty rough that day, had my jerk thing going on and my usual tremor but I wasn’t really all that scared of being prodded with what looked like a large meat thermometer!

Oh dear, another mammoth post - sorry all. Thanks so much for the replies, you are really all being a great support

9

Being able to discuss things with people who understand and be able to laugh about them is good.

The range of symptoms related to MS are very wide, pretty much anything to dowwthe the CNS, Balance and coordination problems are on just about any list of symptoms for MS.

I don’t have enough room to jump out of bed but did find myself toppling when getting up in the morning and managed just to sit down on the bed. That was - in May-June. I did learn that to put my trousers on, to sit on the bed or I’d fall over. I’m getting better (on that) too. I find that if I’ve walked, say a mile (I used to walk a lot more) that I have to think to lift my feet high enough or I tend to trip over. With my left hand I have nearly lost the contents of plates that I thought I was holding level, but was not. I think that more effort was need to get the same message to my hand. In one off tests I think I am just about as strong as I was if I concentrating to complete an action.

Almost any neurological symptom can appear with the disease [cut][4] MS takes several forms, with new symptoms occurring either in discrete attacks (relapsing forms) or slowly accumulating over time (progressive forms).[6] Between attacks, symptoms may go away completely [cut]
http://en.wikipedia.org/wiki/Multiple_sclerosis : with references

So, I would guess that your symptoms could be MS. Your neuro should be ruling out other possibilities as well as looking for evidence of MS.MRI scans are not definite.

You shouldn’t be feelling guilty. Some thing is wrong. They are there to do the tests. We have been subscibing to the NHS.

Best wishes.

Jon

10

Shocking treatment, I would definitely complain.

You are right to laugh about things if you can, it helps. We all still have down moments as well.

I can relate to the drunken school runs. I had a thread on here recently about a similar thing, I decided I was going to do it dressed as Patsy from Ab Fab. Complete with a cig hanging out the corner of my mouth and a bottle of Bolly in my hand lol.

Take care and hope you feel better soon

xx