Forum

How long does a first attack last....if it is an MS attack???

I’m undiagnosed and have been told by a neurologist that I don’t need an MRI as I don’t have MS. However, I’m now into month 3 of pins and needles,(mostly in feet and legs but has been in arms, hands, face and back) numbness, balance issues, dizziness (constant) leg pain and brain fog and I’m sure that it is to do with MS and that I need a second opinion. Can anyone tell me how long an ‘attack’ approximately lasts. I know everyone is different and I’m trying so hard not to get upset when I go to the doctors but I really feel like no -one is listening to me and they’ve written me off as someone with anxiety. Just don’t know what to do…and do the symptoms (if it is MS and not anxiety ever go away)??

Hi

I wish I could answer your question but I’m kinda in the same position as you. I’m about six weeks into what I believe to be a ms relapse and am wondering when it’s going to end.

If it makes you feel any better I was sobbing on the phone to my gp this afternoon, and not for the first time, I might add.

Hope you start to feel better soon.

Ann Marie

Thanks for responding Ann Marie…It’s horrible isn’t it?? Having all these neurological problems and not knowing what the problem is.

I just want some kind of normality and while I’m having these symptoms, it’s very difficult to stop worrying (as I keep being told) and get on with things.

MS relapses can last anything from 24 hours to many months (I think the average is 6 weeks). They normally build fairly quickly, peak and then gradually get better, but there is no rule to it: we are all different.

Even if it really is anxiety, there is no reason why your GP shouldn’t give you something to help, e.g. amitriptyline is often prescribed for functional disorders and is used by many people with MS too. Why not ask?

Karen x

I’ve been like this since the beginning of August, Karen. I’m not really feeling any better - I think I’m just getting used to feeling like this now…My GP did give me some medication, Betahistine Dihydrochloride (which made me feel worse) and Bedranol (which haven’t had much effect).

I know I don’t help myself by stressing and worrying and maybe I should learn to trust my doctors but I guess we all know our own bodies and know how we feel and this is so very different to anything I’ve ever experienced.

I am totally stressed out, as I’m sure so many people are on this forum who go through these neurological problems. I definitely had the onset of symptoms fairly quickly - problems with my eyesight (diagnosed as slight dry eye and short sightedness), a day or so later dizziness and feeling off balance ( I’ve never fallen or lost the use of any of my limbs or had any significant numbness), then a feeling of being in a dreamlike state and not really with it, a fear of being with lots of people because I feel so different and then a few days after this pins and needles throughout my body (both sides), then a couple of weeks later - tightness and burning in my legs. Scary stuff for someone who has never ever been ill!

I’ve had 4 neurological tests by GPs, acute physicians and more recently a neurologist. Full blood work but no scans.

I am definitely anxious but unsure whether the symptoms are causing the anxiety or the anxiety caused the symptoms. I have had work related stress, been through a stressy time in my relationship and had an operation of late. I’m also quite a worrier…although I think I hide this pretty well!

I don’t know whether to push with my GP, the need for an MRI…The neurologist that I saw spent about 45 minutes with me and said that my symptoms weren’t MS…However, I don’t understand how she can make this diagnosis when I haven’t had an MRI and have all these crazy neurological symptoms!

Thank you for your response

Beth x

Assuming that the neuro examined you (did reflexes etc), I would assume that there was nothing out of the ordinary in your clinical exam. The other thing that would suggest it isn’t MS is that your pins and needles were all over your body - this is not typical of MS. And if your eyesight problems have been properly diagnosed then this is not MS either. I also am not sure how the dreamlike state and fears fit with MS.

If this was an attack of MS, it would more likely to have been pins & needles with a clear cut off point somewhere in your body (e.g. just your right leg affected or both legs and up to your waist but no further, etc). These would be there all the time (maybe not so noticeable sometimes though) and, while you had these going on, the dizziness and poor balance would start too. So all of the symptoms would be there at the same time or would last a good length of time and overlap by a decent time. With remission, these would start to improve, perhaps at different rates and to different degrees though.

Not sure how this compares to your experience?

Kx

My clinical exams were fine…Nothing untoward as nothing was mentioned and I presume if there was anything they were concerned about then I would have been referred for a scan. I think it’s only me that’s worried and the GP who I saw initially who mentioned MS on the phone when making a referral and scared me to death!

I would say that once each symptom started then they overlapped if that makes sense… the eye thing came first and then everything else followed.The pins and needles and dizziness/poor balance and feeling like I’m not really myself remain and the tightness in my legs comes and goes (normally if I’ve been on my feet a while or if I begin thinking about my symptoms)

Pins and needles are in both arms and hands, sometimes in my back and in both legs. The pins and needles are there most of the time and they kind of change where they are - sometimes in my legs (pretty constant), sometimes in my arms and hands, sometimes both, sometimes they have been known to appear on my face but they are there most of the time although definitely get worse when I’m thinking about them - if that makes sense.

My eyes were checked and I told my optometrist about my neurological symptoms. He said my pupils were reacting fine and there was no sign of O.N. - just slight dry eye and short sightedness.

I don’t know if I’ve just worked myself up into such a state now that my nervous system is going crazy!

Thanks again Karen, I appreciate you taking the time to reply.

Beth x

It’s the pins and needles that don’t sound right Beth. To be having them in every limb, hands and face would mean multiple lesions (in spinal cord and brain stem) - in which case, if your symptoms were active when you saw the neuro, you would definitely have had some abnormal signs in your clinical exam.

That tightness when you are on your feet for a while plus the dizziness and pins and needles might be explained by a blood pressure problem I think. Have you had it properly investigated from a non-neurological perspective?

Kx

My BP has been highish, 160/100 at its highest but my doctor didn’t really seem that concerned about it???..I guess I’ve seen 4 different doctors in the hospital while I have been having these symptoms. If there were considering MS like symptoms in their neuro exams then one of the 4 would have picked it up Karen, is that what you are saying? Only one has been a qualified neurologist but the other three have been acute physicians and have more knowledge than I have!

Can you explain what an abnormal clinical exam would mean? Does that mean I would have been sent for an MRI if there was anything out of the ordinary that they had picked up?

Beth x

A clinical exam includes things like testing reflexes, balance, walking, detection of different sensations, coordination and eye movements. An abnormal exam means that any one or more of these weren’t as expected, e.g. reflexes that were absent or the inability to tell the difference between something sharp and something dull without looking. If someone is in the middle of an attack of MS, it would be most unlikely for everything to be normal.

Abnormalities tell the neuro roughly what part of the nervous system has been affected and this tells him/her what tests should be done (including MRI). Without any abnormalities, the neuro has to either work from the GP’s referral or the patient’s previous medical history - if there’s nothing there, then the obvious conclusion is that the symptoms are not caused by damage to the nervous system, i.e. that they are either a functional neurological disorder (see www.neurosymptoms.org) or something non-neurological. As consultants are not generally brilliant at considering conditions outside their own speciality, what normally happens is that the patient is discharged and left to work out next steps with their GP.

If you google “neurological clinical exam” you should be able to get loads of info on it.

I don’t think it wouldn’t hurt to have the bp angle looked at - it would be a cardiologist that you would need to see I think.

Kx

Karen that’s great…I really appreciate it.

I’ve got myself in such a state that I think my body is completely messed up at present . I’ve had a few neurological exams, and there has been nothing abnormal that has made the doctors want to take this further, apart from the original GP (although his neuro exam was normal)…It’s only been my worry over MS and how stressed out I’ve been over it, that actually got me a day in a Medical Day Unit and an appointment with a neurologist.

Thank you so much for all your advice and help. You’ve been fantastic.

Beth x

Hi Beth,

Like you I recently saw a neuro and was assured that he really didn’t think i had ms, sounds like yours has a really rubbish bed side manner. Apparently its really common for something to happen like a trapped nerve etc and once the symptoms die down you develop an over sensitivity to sensations that are there all the time. Like you i had pins and needles everywhere, but a very normal exam. Also like you previous to this happening its been a very stressful time (father passed away 23 months ago, relationships etc) and i’m sure this lowers your natural bounce back level a lot.

In the 4 weeks since i’ve seen the neuro things have settled down somewhat but they are still there, most often when i am stressed, but i have been prescribed a limited dose (4 months) of garbeptin to settle me down, the theory being i think that if the sensations are dulled you stop obsessing about them and your brain gets reset. I’m also being MRI scanned anyway as it sounded to him like i have something up in my neck that set all this off. Of course the neuro could be wrong but i don’t think it is.

I wouldn’t like to say that there is nothing wrong with you, somthing set this off after all! I’m sure everyone here hopes you don’t have MS and its something treatable. I’m just surprised the neuro didn’t scan you anyway as according to the Dr’s i know neuros tend to scan almost everyone as a matter of course just to rule things out, even if just to cover their own backs at a later date.

I hope this has helped a bit, take care

Sara

Thanks Sara…When I asked about scans, I was told there was no need :0/

I’m back to see my GP in a couple of weeks so if I’m still struggling, may ask to be referred for a scan. I know I’m completely anxious now but as I’ve NEVER been ill or had time off work, I’m struggling with the whole symptom thing.

However, I have had problems with my neck for a long time…pain, stiffness and cracking when the bones are massaged…could be down to this I guess…A masseuse said recently that I have some incredibly tight muscles in my neck and maybe it may be worth seeing a chiropractor…I just don’t know what to think anymore but the pins and needles and dizziness/lightheaded/feeling not really myself feelings are totally doing my head in!!!

Beth x

Hi Beth,

Thats a good sign surely that he didn’t bother with the scan . I’m sure i’m only being sent for a scan because i have some lower body issues that the neurosurgeon is sure are to do with a wear and tear issue in my back. I’m so getting my monies worth out of the nhs

I do understand about the symptoms though, its very hard not to sit there going “stop it” at them ALL the time!

Sara

I think I’ve read so much of late and focused on all the bad stuff rather than the positive stuff. I’ve got into the train of thought where I’ve felt what if they’ve missed something etc etc…and I’m self testing all the time - not good :0( What I have to remember is that I’ve been to Google medical school and my neuro has done his job for years.

I did have a bit of numbness in my leg about 2 years ago - explained as a trapped nerve from sitting awkwardly on a plane, but prior to these very real symptoms - absolutely nothing! I have to admit my head is not in a good place at present as all I can really focus on is these symptoms and how different I feel to how I did a few months ago :0(

Hope all goes well with your MRI hun.

Beth x

Karen,

Can I just ask…If I had multiple lesions (due to the pins and needles/tingling in legs arms, hands, feet, face and back) it actually feels like I have electricity in different parts of my body…then would this definitely show in a neuro exam or in other more serious ways? I have now read up on the neuro exam and know that I have had 2 full neuro examinations and 2 half hearted neuro exams (tested reflex, balance, sensation and eyes)

I know I’m being a pest and looking for reassurance but I’m at a loss at what to do as the neuro said I was fine but the symptoms still remain with no signs of any real improvement or change!! I’m considering paying privately for an MRI just to see if there is anything more untoward going on.

Remember that I’m not a neuro, but I would think it would be almost impossible to have a normal exam if you had multiple lesions. At the very least I would expect abnormal reflexes and sensory perception. Kx

Thanks Karen…I appreciate the advice…Maybe it’s time for me to start listening to the doctors and not thinking I know best :0/

Beth x

Hi Beth,

Its is really hard to chill out and relax and let your body get over these things - keeping busy helps but you can’t keep busy all the time and its soooo hard not to obsess over symptoms (just for you i will admit to the fact i have started rewatching really cheesy box sets in the evening just to let my mind off the hook so to speak (the OC - i mean really :-))

While the professionals can be a bit patronizing sometimes (sigh) they do have years of experiance to back up their statements.

My best advice would be to try and relax as much as possible, maybe find a beginners yoga class (the balance issue won’t be too much of an issue as in beginners no-one can balance well , or maybe pilates as you are sitting down most of the time. I don’t know your at home situation but try and set aside some time just for you everyday - have a nice relaxing soak in the bath - take a book in there and really let your self unwind. Its a slow job getting over the stress of uncertainty all that adrenalin and cortisol really messes up your system. Mainly don’t expect things to get better overnight, its been 4 weeks since i saw the neuro and while the symptoms are a lot better they are still there. Try to look at the long view, in two weeks think about the level of annoyance they are giving you and see if they have improved a little. If you want to inbox me thats fine, i’m happy to chat (though from reading this through you had better get used to the spelling!) Like you i’ve always had obscenly good health before this and i don’t think you are prepared to deal with a chronic issue like this (no body is!). Unfortunately there is no magic bullet you just have to wait for it work itself out.

That said though in the meantime you could talk to your gp maybe he can give you something to help you through this short term? If you explain how you feel and what you have been through (there’s no need to be embarassed , GP’s hear everything - even though they probably don’t want to) i would think he/she will try and help you out.

Take care,

Sara

Hi Beth - I came across this thread after a week of searching online for answers. I have my first appointment next week. My symptoms are exactly like yours in terms of the pins and needles description, like tiny shocks. They, too, are all over my body and have been going on and getting worse for a month. Some are turning into slight pain even. I also have periods of feeling like I am not in reality as you described. I’ve read lots of different posts, but yours sounds the most like mine, except for visual issues. It’s been some time since your last post. Wondering if you’ve found any answers for the pins and needles issues. I’m at the point where the anxiety is so high I break down crying. Sadly, I watched an uncle suffer with a bad case of ms for many years, which is what frightens me even more since I have read that it can follow in families. Hope you are doing better!