MS fear is back

[veebee]

Hello everyone

I haven't posted here for quite some time now - previously I had a very anxious few months were I was very scared about having MS. My symptoms were mainly sensory - stuff like random tingling, pins and needles, numbness in both my hands, aches and pains etc. I saw various GPs and a neurologist and had an MRI in June which came back as clear - no evidence of dmyelineation (sorry about the dodgy spelling).

Anyway, that, I thought, was the end of that. I felt relieved that MRI gave no indication of MS and we booked a holiday during which I didn't have any symptoms. Then I came back home and over the past two months or so I've been having a sore right leg. It happens every couple of days and starts just above my knee and goes into my thigh. Mainly it happens in the evenings or just before I go to bed. It's a dull, nagging ache - sometimes my lower back (right side) feels twingey and sometimes I get a pain doing down the back of my thigh. I don't have any problem walking (in fact it seems to relieve the ache if I move about) and I don't think I have any weakness.

I thought it was maybe related to me going to the gym (have been going around 3 times a week and I do an hour and half each time, on bike, treadmill, rowing machine, weights etc). I think the ache has been getting worse - its actually waking me up sometimes during the night. I've also had stiff feeling fingers (on both hands - thumb and next finger along, intermittently) that feel a bit densensitised around the fingertips, and sometimes my vision gets a bit blurry (this is only very occasionally).

My boyfriend has suggested that its all in my head and that its to do with the fact that I'm still anxious about MS but the pain is real. I should also mention that I've had an achey right leg in the past (again it usually happened when I went to bed) but I thought it was just restless legs. I had mentioned it to the neurologist at my initial consultation but he didn't make any comment about it.

I decided to go to the doctor's about it - had arranged to see the GP I trust but when I got there on Friday night somehow got stuck with a doctor I most definitely do not trust. I saw her when I was going through my initial MS scare and she terrified me with some of her comments.

I told her about my leg, she said no point in doing a physical exam and that it was probably a trapped nerve (she didn't think it was sciatica or related to going to the gym). She said I should see a physiotherapist. Then I told her about my stiff fingers…again she said trapped nerve! I ask about my eye - she just says 'go and see an optician' (which I'm doing at the weekend).

Then I ask about whether she had received a letter from my neurologist with the results of my scan, and if so could I see it…she says 'ok, but I can't go through everything because we close at 6pm' I had wanted to ask about CBT and anti-depressants but didn't get a chance as she rushed me out the door. I had a sore left arm back in Nov and it was attributed to a trapped nerve too…how common is it to get 2 trapped nerves in different places over that timespan?

I just feel that she didn't care. I'm really worried about my leg and my fingers - what if I've had an MRI too early to detect anything, and it's only now that more serious things are happening? As far as I know (from reading online) MS can be difficult to diagnose. Maybe I do have something wrong and it's just not been picked up? I think one of the things that's gnawing away at me is that no-one has actually said definitively what caused my symptoms in the first place - GP said it was anxiety initially (and told me to look at an anxiety website) but since my MRI result there's been no further discussion as to the actual definitive cause of everything.

I don't know where to turn or what to do next. My family and friends have been though enough over the past few months with me and I don't want to start this all up again - but I'm getting really scared. I'm annoyed at myself for thinking like this again and having to post about this subject again but just don't know what to do. I feel like I'm going mad over this.

[Eleven]

I was about to post a similar thread myself! We seem to have very similar experiences. At the risk of highjacking your post, may I describe where I'm at currently and perhaps others might be able to help us both?

I've gone through the whole MS/MND fear thing since about Feb time but had been feeling a bit better of late. In the last few weeks I've had an EMG (Nerve conduction test) and an MRI. I saw my consultant this Monday to review and, although he was positive and felt I should be reassured by the results, I'm now feeling almost as bad as I did months ago!!? My worries now are:

MRI - The scan I had done was of my spine, neck and the base of my head. One as if looking up from my feet and another as if I'd been sliced in two. You can see the back of my brain in one of them. I was expecting a full head scan. Consultant says that there is nothing to worry about on there - and highlighted the spine was clear whereas there would have been white spots if MS was present. Is it as clear cut as that though? I was expecting more. I'm plagued by doubts that they did not go into enough detail.

Twitches/Fasticulations - These have been driving me nuts since last week. My calves now seem to twitch and pulse almost all the time. I can sit and watch them shimmer like there is some small creature moving about beneath the skin. I also get lots of other areas that twitch very, very frequently. Bicep, wrist, fingers, stomach, buttock, thighs. Often they'll seem to communicate with each other! I'm really struggling with these.

EMG - These tests also seemed very short. He did a couple of nerve tests on fingers, thumb and wrist on both hands and then did some muscle tests where he stuck needles in my forearms, upper arms and calves and recorded the noise as I flexed. I asked him afterwards what the tests would highlight but he said it was really just peripheral and intended to pick up trapped nerves etc. Not what I wanted to hear!

Pains/Aches - I get lots of aches that seem to emanate from my hips and pass down through my legs. Feels sort of like a sprain. I understand this can be a symptom of MS so their timing in coming back now is poor.

Relapses - I also understand that early MS comes and goes in waves. The fact that I'm now starting to feel bad again after a period of being ok only serves to fuel my fears.

Combining everything above is really getting me down and I would greatly appreciate the thoughts of others.

Sorry again to Veebee for jumping in on this one, but our stories (and timing!) are so similar I thought it was worth having all in one place. I hope we can both get some resolution and comfort soon!

[countrygirl]

If you have had a clear mri brain scan then you almost certainly don't have ms or any other demylianating disease. Huge number of spinal issues can cause all your problems and the more you worry of course the more your anxiety symptoms add to the other symptoms. EAsier said than done not worrying:wacko: I know!

I have had a dodgy mri scan 7 yrs ago for ms and have a might have might not have ms diagnosis but I don't ahve any loss of motor function and strangly am not worried about this possible diagnosis at all. I have recently had a visual evoked potential test to see if my optic nerve is affected and am waiting for the result_ I won't have a lumbar puncture as there is no miracle cure if it came back positive so won't take the risk. I have had all my spine mri scanned and it was clear of lesions just the ones in my brain causing the neurologist to say mmmm not classic places for ms but could be.

So please if you have had a clear mri - forget worrying about ms - a dodgy back and anxiety are much more likely reasons for your symptoms.

[Zaffi]

Hi

I went through a similar phase some years ago, similar symptoms but also with a head tremor. My thoughts ran to MS or Parkinsons. I had a heavy ache in lower back, burning ,tingling pain on outside right thigh, twitching muscles, closed throat, stiffness, tingling in fingers and dizziness...
The leg problem turned out to be coming from Sciatic nerve, the tremor initially caused by tension in my spine which ran to my shoulders and neck. The stiffness, tingling in my fingers caused by rheumatics.. The tremor calmed after i had diagnosis because the high anxiety state had made it worse due to my muscles being made more tense..Can understand where you are coming from with your thoughts but i do wish that doctors would be more understanding of anxiety and choose their words more carefully so not to scare people. I was lucky with mine they gave me time and understanding but i know many others who have put off going to GP because they feel they cant talk to them.

[veebee]

Thanks country girl - MS seems to be a very popular worry for people on anxiety sites.

I know a clear MRI is good news, but I've read so much about MS being tricky to diagnose.

I guess I'm trying to look at this way: MS is rare so chances of having it are unlikely in the first place; neurologists have seen and treated cases of MS, so they know what they are looking for even from just an initial physical exam; MRI scans pick up loads, so if I did have it, surely something would have come up (?); and finally, like you say, there are many more common, more likely things (such as back problems and anxiety), that I could have rather than this relatively uncommon condition.

My own reasoning looks good, but as we all know, the trick is believing it. And seeing a doc who can't even be bothered to discuss symptoms and look at the likely causes doesn't help.

[veebee]

Zaffi, sorry, didn't see your post there - thanks for replying.

I think you've hit the nail on the head - depending on which doc we see when we present with these issues, our path can go one of two ways - either we are reassured by a sensible doctor who examines all likely options or we are sent a merry dance down the health anxiety path. I was unlucky in that one of the docs I saw made some stupid, insensitive comments and that's what has stuck in my head.

Sometimes I think they are a law unto themselves.

[libbie]

hiya,
i too could have written your post. ive been suffering with pains in my legs, squeezing, tightening, cold burning sensations etc muscle twitches the lot. i had mri scan and brain scan. went to see neurolgist beginning of week, was totally ignorant of what i was feeling, but the mri was all clear and absolutely no sign of a degenerative disease. although i wanted to know what this was then, cause although i ve suffered from anxiety for years, i didnt actually feel anxious. he was very dismissive and said stop worrying about it. even though i dont feel anxious, i have been through a rough time with my motherinlaw dying. i thought i handled it quite well, but in reality, i think cause my head coped with it, anxiety struck my body instead. you know its very clever, it always targets something that it knows will worry you, then it causes the vicious circle, and its won!
although im still having all the feelings in my legs they have died down a bit, i suppose the more i accept that its anxiety, the more im winning, and hopefully the syptoms will die down.
i think the neourolgists are so dismissive because they do see people with m.s. then they see people with anxiety, and they can tell straight away which one is which. they are not anxiety specialists so dont seem to have time for people with "nothing" but anxiety wrong with them. i do wish they would realise that anxiety is real, its physical, and can ruin your life as much as any other disease, although it cant kill you. i think we have to accept symptoms of anxiety, which is really hard when you feel so bad.

libbie

[Eleven]

Does anyone else have such constant muscle twitch/pulses though? Mine seem to be almost non-stop! As I said my calves are constantly 'bubbling' with small little pulses that you can see. I've just come back from a lunchtime walk and now the backs of my thighs are going nuts - rippling all over. It's making me feel really low.

I want to find someone else to take my MRI scan to look at with and specifically with regards to MS. Just don't know where to go...?

[veebee]

Thanks Libbie, glad to hear you got that clear MRI - such a relief, isn't it? Also glad to hear that you are feeling better and getting the better of your anxiety!

You're totally right - specialists see people with serious physical problems, then when they come across someone like me they just think 'yeah, whatever'.

Eleven, twitching is anxiety related but if its making you feel terrible then maybe speak to a doctor you trust? I think you are in same situation as me - clear test results but that element of doubt is keeping everything going. I'm going back to see the doc, have a counselling appointment arranged and am going to see the optician on Sat. If there was any sign of MS in your MRI the consultant would have picked that up straightway, so you don't need to worry about that.

[Eleven]

Even though I didn't have a full brain scan like yours?

[veebee]

If there was any sign of demylineation I'm sure it would have shown up on your spine. Can anyone confirm pls?

[AcroSplat]

Does anyone else have such constant muscle twitch/pulses though? Mine seem to be almost non-stop! As I said my calves are constantly 'bubbling' with small little pulses that you can see. I've just come back from a lunchtime walk and now the backs of my thighs are going nuts - rippling all over. It's making me feel really low.

I want to find someone else to take my MRI scan to look at with and specifically with regards to MS. Just don't know where to go...?


I get those twitching/ pulsating muscles, although mine seem to be fading away, Just one twitch (eg: last few days im getting them in my hand again) scares me so much, and i guess its that 1% of fear that keeps them around.

If your not getting any weakness then im sure the twitching is benign.

There is that syndrome called Benign Fasciculation Syndrome. Ive been reading into that and my twtiches do tend to match that.

I get all over body twitches which feel like a single pop or bubble. Mostly they last for 1 second, however some times they can last from 2 to 5 seconds.

Then ive noticed i have hotspots. These spots i begin to twitch for about 3 days non stop, and then it fades away. These scare me the most as when it happens they go on for 20 to 30 seconds, and then stop for a few minutes and then come back again. They occur in the same spot and last for about 3 days. So far ive had them in my left hand, and in my thigh.

Ive also noticed then if i tighten the muscle they occur in, they stop. But then the downside to that is i end up with muscle pain for a few days.

[AcroSplat]

If there was any sign of demylineation I'm sure it would have shown up on your spine. Can anyone confirm pls?


I think so Veebee. No point a Dr sending you for an MRI if nothing will show up. And i think they only scan the top part of the spine ie: the part that connects to the brain and in the neck. (as well as the brain)