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not diagnosed but feeling very alone with these odd symptoms

I hope its ok for me to post here and I apologise in advance for the long post. Ive just been feeling very alone with these symptoms. i dont really feel like telling friends and I also wonder if it is appropriate to post here as I have no diagnosis just a bag full off odd symptoms. But if anyone wants to continue reading Id be glad of some support…

Last Sept 2011 I began noticing strange sensory symptoms including tingling, prickling and vibration in my arms and legs, dizziness - often when sitting it just felt like the room was beginning to turn, muscle twitches all over and little (non visible) spasms or aches in my hands and feet as if they were being pulled together and often a general vibration feeling in my body.

I live abroad and went to my GP here who was quite quick to send me for an MRI of head and neck (without contrast) with the question of an inflamatory disorder and sent me to a neurologist. The neurologist noted that my vibration sense was slightly reduced and that i had very brisk reflexes (including a self limiting clonus which obviously puzzled him but which he said can also be normal) . Then the MRI (without contrast) was clear so it was assumed there was no MS/inflammation and I was told to come back if I had more symtoms. After a while the symptoms subsided and I thought that was it.

Almost a year later, this summer I started again noticing strange symptoms, for two weeks my left arm felt so heavy, as if i had just had an injection in the upper arm and the ache went into my forearm and fingers. It often felt as if the arm had just been asleep and was reawakening. Also again I feel like I am vibrating or buzzing or trembling sometimes throughout my whole body. I feel tiny spasms in my hands and feet and I feel dizzy again and sort of distanced from everything around me. Then for three days when I bent my head forward I felt a strong vibrating sensation at the back of my left leg ( like a mobile phone but with a pulling feeling as if there was a string joining my neck and leg). I looked online and read about Lhermittes and although it didnt sound like a classic case it was like swtiching a switch, i would bend my head forward and i would vibrate in my leg and bend my head back and it would stop but suddenly after three days it stopped and now when I bend my head forward there is nothing so not quite sure what that was…

So as you can see Im not in terrible pain or agony, I just feel something isnt right and its coming back again. I also read that MRIs without contrast only show old lesions and not new „active“ ones and since the episode I had when they did the MRI was the first of it’s kind it would have seemed logical to me to use contrast as I may have not had any old lesions to see. So I do wonder if I should return to the neurologist now?

Im sorry about this LONG post but its the first time Ive “opened up” and well, somehow I just wanted to share what Ive been experiencing and not feel quite so alone with all these strange things, maybe someone has been through something similar and can relate to what Ive written.

Thankyou! Caro

Hi Caro, first off, please don`t apologise for posting here or on any of the boards.

As the title of this board reads new and before diagnosis.

There are loads of us here like you, with odd sensations, spasms, mobility problems and a whole barrel full of other things going weird inside us.

I think you could do right to see your neuro again, as things are unresolved for you.

The sensation you describe with electric shock type feelings running down your leg, is typical L`Hermittes. I used to get it, but not now.

Ive been on the can`t get a diagnosis`` trail for 14 yrs and there are some folk who have been on it even longer!

I hope your problems can be sorted soon and do keep chatting to us, yeh?

luv POllx

Hello Caro, This is a wonderful place for support :slight_smile: I can relate to what you said on another thread. I am quite reluctant to really open up fully about what is going on but I know I should. Just this morning I was in tears before I left to do my little Saturday job. It is hard because being undiagnosed I am convinced I will get on people’s nerves! I am awaiting my first Neuro appointment in October. I think if you can it might be wise to at least inform your Neuro the symptoms are back and you could be seen again. I sit back and get on with things too much, which hasn’t done me any good whatsoever! I can’t relate to the vibrations or dizziness but my symptoms are sensory plus balance etc. fatigue that is so bad and gone on for so long I have forgotten what I was like without it :0 One thing on here you will never be is alone :slight_smile: Sam xx

Thanks Poll for your quick reply, almost had tears in my eyes, just feels good to share and feel taken seriously and to read about and “talk” to people with similar experiences so you dont feel like you are going crazy.

Yes I also felt that I was experiencing a kind of Lhermittes - it was so clear and my neck felt like a switch ie neck down = leg buzzing, neck up = no leg buzzing (tho not electric shocks, just a sort of electric buzzing) but it only lasted 3 days which I guess is not so typical.

I do feel a bit nervous to return to my neuro simply because the symptoms are not exactly devastating or painful and are a bit vague but its just this constant feeling that something isnt right and strange things are going on, well I imagine you know what I mean about that…

May I ask about your 14 years unable to get a diagnosis?

So thanks so much for taking the time to reply, it made me feel better :slight_smile:

Hi Caro

welcome to the forum!

You are definately in the right place and you will get lots of advice/support here. We are a friendly bunch.

It would be a good idea to see neuro again about new symptoms so they have a full picture of whats going on. Many ms symptoms come and go - thats normal.

I got my diagnosis pretty quickly - within 6 months. Poll still doesn’t have a diagnosis after 14 years. We are all different. Ms can mimic other conditions and can sometimes be difficult to diagnose.

I’m glad you have ‘opened up’ here. It is the best place because we understand and sympathise. Don’t be scared to keep posting - people will try to help if they can.

You can’t get better advice than from others who are going through or have been through the same things.

I was diagnosed 7 years ago and like lots of others on here - like to help newbies where possible.

Best wishes

Teresa. x

Thank you so much Teresa, it really feels like a huge relief to share what I have been feeling. I dont know why I dont really feel like telling friends, maybe as you suggest it feels more comfortable to talk to people who know what one is going through. I guess I dont really expect friends and people who arent going thru something similar to understand how I feel and also I really dont want t worry anyone unnecessarily. Ive talked to my husband who is very lovely but if i keep talking to him about all the strange things I experience I begin to feel almost embarrassed.

How did you get your diagnosis - were your symtoms very sudden or over a longer period of time? Did you get the diagnosis from your first MRI?

Well re going back to my neuro: Last week when I had these three days of what I feel was a form of lhermittes I thought I would certainly return to the neuro because it was very unnerving and felt like a clear sign but now it suddenly stopped after 3 days I am less convinced I should return to the neuro - do you think its possible to have lhermittes sign but just for a few days? That seems a bit strange to me. I cant understand that for 3 days every time I moved my head down my leg would buzz in exactly the same place behind my knee and down my calf. I would be working or doing things with my kids and notice my leg buzzing and then realise - oh Ive just bent my head down again. It was so clear and then today I woke up and its gone (which is good in itself because it was beginning to drive me nuts). Today I just feel like Im sort of vibrating generally, like sitting on a washing machine or something but nothing in my legs when I move my head down.

I guess since my first MRI (without contrast) a year ago I wonder if I would be taken seriously if I asked for another MRI now though the neuro was nice and concerned,

Wow, it really feels like a weight off my shoulder to actually honestly “talk” about what I am feeling.

Thank you so much :slight_smile:

Caro

Dear Sam,

I just saw your post. Thank you for writing. You express perfectly the feeling of “being undiagnosed Im convinced I will get on peoples nerves”. I think thats just how I feel so I really understand you :slight_smile: What exactly have been your symptoms? What balance problems have you had? have you actually fallen down? Mine make me feel like the room is turning or I may fall to one side but i have never actually fell. Do you feel dizzy or weak in those moments? But last week I noticed also that when i walk downsatirs i feel like my legs will give way they are so shaky- i had to hold the handrail not to fall down (but it was only when i walked downstairs and not so much a balanace as a weakness issue in that moment).

i cant say I have felt fatigue (at least not more than the usual with kids and work etc) but i imagine that must be very hard especially if it has been going on so long. What has your doc said about that? have you had an MRI or any testing?

Thanks again for sharing with me and responding to my post :slight_smile:

Caro

Hi Caro, and welcome

I do think that you should be going back to the neuro. Anything that lasts more than 24 hours is classed as an attack, so although your Lhermitte’s only lasted 3 days, it is still important new information, especially as you had other symptoms at the same time.

As far as the MRI is concerned, whether or not contrast would have made a difference depends on how long you’d been having the symptoms. The data tend to average out to 6 weeks being key - before that, use contrast; after that, it’s probably not necessary. You said your GP was quick to get you referred, so if it was within 6 weeks, yes, they could have missed something. Also, it is possible to have MS and have a clear MRI (although this surely depends on the quality of the MRI) but it is also possible to have had no symptoms, but to have lesions on your MRI - this is because people with MS have what is called “clinically silent” lesions, i.e. lesions that don’t cause any observable symptoms. Nothing is ever straightforward with MS!

Of course, it could be that your symptoms are nothing to do with MS at all, but only a neuro can tell you for sure - so back you go!

Good luck :slight_smile:

Karen x

hi caro

don’t be shy of going back to the neuro. neurological problems are strange things, he will be used to seeing people who describe all sorts of symptoms.

its good that the neuro was concerned, he seems approachable.

good luck

carole x

Thank you Karen and Carole,

I didnt know that anything over 24 hrs could be called an attack nor that what I experienced could be considered an attack.

The GP sent me straight away for the MRI last year (I live in Germany and the health system here is very good so I got an appointment fast). I think it would have been about 3-4 weeks after my symptoms began. Is what i wrote correct about contrast showing newer “active” lesions?

Yes Carole you are right, Im sure Neuros are used to hearing a lot of weird things but maybe I should wait a bit and see what happens in the next while, if the lhermittes thing comes back etc.

Btw, when my symptoms restarted I wanted to find out what actually causes of MS. Although I know its unclear I read that there is a link between having mononucleosis (glandular fever) as a child/teen. Has anyone else heard of this? I had a very nasty bout of mono when I was about 9 or 10.

Best wishes to all,

Caro

Hello again Caro

I got my diagnosis as i collapsed on my bathroom floor when my second child was 8 weeks old! Had the ambulance and everything what a drama! lol!

I had really bad vertigo and could not stay upright. Bit like being on the waltzer but couldn’t get off for a whole week. I then lost the sight in one of my eyes.

Had a few wierd symptoms before this but shrugged them off. Lost my vision 5 years before this also (one eye) after the birth of my first child but my gp told me it was an infection and it would go by itself!! Grrrrrr!!!

Had lots of tingling sensations down my legs previously also but when my appointment came through i was fine so cancelled ,my appointment (big mistake!) but i thought it was nothing serious. I also had a numb face several times but gp just gave me steroids to clear it up and i never questioned him. I had no idea this all would add up to ms! why would i?

It came as a big shock! (understatement!!)

A lot of people on here believe there is a link with glandular fever but not everyone with ms has had it. I think it increases the risk from what i have read myself.

I had a brain only mri, lumber puncture, and evoked potential tests and got my diagnosis. Guess i must be a text book case to get diagnosed so quick

I very rarely talk to family about my ms as they don’t understand - how could they? they don’t have it!! The symptoms can be so strange. (if it is ms you have!)

So i come on here and moan/rant and rave and feel better for it

Please see the neuro - each attack recorded will help towards you getting a diagnosis if it is ms.

Best of luck

Teresa. x

An attack is any neurological symptom typical of demyelination that lasts at least 24 hours without the presence of fever or infection. (Have a google for Polman et al (2011). Diagnostic Criteria for Multiple Sclerosis: 2010 Revisions to the McDonald Criteria - these are the latest criteria for MS.)

Yes, you are right about contrast showing up active lesions. It actually helps to show up breaches in the blood brain barrier rather than lesions, but new inflammation happens where there are breaches so it’s effectively the same. It’s by no means perfect, but it can help to see new lesions that are too small to see on non-contrast images so it should be used when symptoms are so new. Since you had your MRI after only 3-4 weeks, you really should have had contrast.

The glandular fever / mono thing is almost certainly a factor in developing MS, although it’s what causes it, the Epstein Barr virus, that’s important rather than how it manifests itself - some people get just a mild, 24 hour “bug”, while others get full blown glandular fever. It’s not the only factor though. Other important factors are genetics and vitamin D3 (both in the womb and growing up). Smoking also increases the risk.

I do think you should see the neuro now rather than put it off. There are no benefits to putting it off, whereas seeing a neuro could lead to finding out that there is something completely different causing your symptoms and that it can be treated! And if it is MS, seeing a neuro could lead to earlier treatment which could make a big difference to your future. Believe me - it is best to start throwing everything you can at MS as early as possible - it can delay disability, slow progression and even increase life span.

Kx

Hi Caro - really glad to see you’ve posted after commenting in ‘my’ thread. I haven’t experience L’hermittes at all, but can say a lot of what you’ve talked about sounds familiar to me. Try to get another neuro appointment - as you know I’ve got one with a similar of ‘something not being right’ - we can do it together (along with everyone else in this forum who’s still waiting!)

I hadn’t heard about the link between MS and glandular fever, but I probably had it when I was 20 (fear of doctors meant that I waited so long before going to see them that I was getting better and it wasn’t really worth testing apparently, but that was the suspected diagnosis. I tell most people I had it because it’s easier than going through the whole story!) Not quite child/teen, but you never know.

Gosh Teresa, that is quite a dramatic story, I believe losing vision is very typical for MS tho. Did you ever suspect MS before you collapsed? Is there anyone in your family with MS? Whatever, I can imagine the shock. But now that you are diagnosed isnt it easier to talk to family and friends about it?

I was reading about the glandular fever link because it was actually very interesting reading. It also says that some people may have been infected with Epstein Barr without realizing it (ie they didnt have full blown gladular fever but were still effected) so maybe more people had the bug than actually know it. I had a really bad case of it apparently. i slept for 1 or 2 months hardly waking and my mum told me they could feel all my lymph nodes and my spleen was massive and my gums bled. But i was about 10 so I dont remember too much of that thankfully.

Yes Dagny I felt very moved and reassured by your mail and that you felt similar to me, it really helped me to write (after watching the board for a while) and now Im glad I did :slight_smile: Like you I had tears in my eyes when I read the responses and then I suddenly just felt like the gates of my feelings had been opened.

Btw I dont think there is any form of confirmation re MS and mono, just that according to studies MS is more common in people who had childhood/young adult mono.

Thanks Rizzo for your words re MRI, that sounds as I understood it. If you look online you can read all over the place that contrast shows active MS legions and yet i am not sure how many radiologists or neurologists (here in Germany) are really aware of this. they seem to think an MRI without will show if you have ms lesions (which of course is true in many cases for old ones). I guess at times the internet must drive the docs mad because these days everyone can look up their symptoms , causes etc in 5 mins on the net. Im sure it leads to a lot of people misdiagnosing themselves but in some cases it can be empowering for people with unexplained symptoms and probably makes the docs feel undermined…

Best wishes,

Caro

It is possible to see new, active lesions without contrast, but the technique is not something that is possible with standard quality hospital scans, certainly not NHS ones anyway. I’m surprised that they aren’t on the case with contrast in Germany - they seem to be so efficient with everything else. Or maybe they use really good scans so they don’t feel they need to? Either way, it’s definitely something to be asking about I would think.

Kx

Hi Caro,

Like you I don’t know whats up with me (pins and needles/burning sensations etc).

Its really hard to cope with something that doesn’t show but everybodies lovely here and everyone understands how confusing and scary all this is.

Feel free to moan, its what we are here for :slight_smile: It really helps to open up - i felt much better after i’d confessed to stalking the forum and it really helps others like me to read your posts too as its good to know your’e not alone.

Take Care

Sara

With some things the Germans are very advanced, with others less so…

Thanks Sara, yes you are right that its so difficult because nothing shows, sometimes when sympoms subside I wonder if it was all just in my mind…but I know it isnt!

Sending best wishes,

Caro