just been referred to a neurologist for suspected ms

[Rachel29]

Hi I'm being referred to a neurologist from my gp as she seems lost now as to what is wrong and after a chat today she suspects it's ms.

For 12 weeks now I've had tingling in my lower half with numbness/wet feeling in my knees but over the last 6 weeks ish it is now in my arms and face. I've been on every pain relief going and nothing is stopping it plus With my vision it's as if I'm in a trance all the time and with some new tabs I feel drunk . I've had neck and lumbar X-rays and an bloods done for nearly everything and they were all fine. I've had over 4 weeks ago a lumbar mri and still waiting for results but the doc has said today if I had a herniated dics I would of heard back by now so she has to think of what step to take next. She said for a while she has thought it has been early ms signs but didn't want to worry me. She now is going to see if I need to go for a brain mri before seeing a neurologist as I could be waiting months for an appointment.

I'm scared but unsure what to think at the moment.

These seem to be my main symptoms,

 

Tingling all over

Get pins and needles very easily

Feels like Sciatic pain mainly right leg

Vision seems like I'm in a trance

Sometimes feel very woozy

Go light headed quite abit

Ringing in ears(tinnitus)

Left Eye twitch on and off

Slight hand tremors but worse in the morning

Stiffness in my lower back

I do get rather low in myself quite abit but would not say depressed and I can't handle any kind of stress, I seem to loose my temper very quickly.

 

Any kind of advice would be appreciated. Thanks

Edited 2 Aug 2016, 9:12 pm by Rachel29

[Nick]

Hi Rachel,

 

A big hello and welcome to the forum. This is an excellent place to have found. First things first, Your GP sounds as if they are doing all the right things. Conditions such as MS can be very difficult to diagnose and this can only done by the neurologist. A lot of your symptoms are the kind of effects you get with MS, however they are also things that occurs with different conditions. Until you get a proper diagnosis you are in, what many refer to as, 'limbo land'

This is a particularly difficult place as the 'not knowing' part is, as many of us here know only to well, very stressful. This is just at the time when you need to avoid stress! This aspect of stress avoidance should be your No. 1 priority right now.

MS itself is a complicated condition that effects each of us very differently. While some people are very compromised by it, the majority of people may not be so badly effected and learn to understand their particular problems. So at this stage try not to worry to much. If you want to learn about MS stick to trusted websites such as the MS Society and the MS Trust. This site is special as it is run by and used by anyone who is affected by MS, that includes you as you are all ready thinking about the possibility. So I am sure others will be along to support you, which is one of the things which will help with the stress.

 

Nick

Edited 3 Aug 2016, 9:33 am by Nick

[Skippysprite]

Hi Rachel

 

Welcome to the 'club' that no one really would choose to join, but we are here, all very friendly people, always willing to listen, and offer advice when they can.

 

Ms is, unfortunately, notoriously difficult to diagnosis, so you need patience and let the neuro decide, as there are a lot of things that mimic ms, so really it is a case of elimination, so hang in there you are on the right path.

 

In the meantime whilst waiting for your appointment, make a precise list of symptoms, plus any questions, as time goes really quickly in with the neuro, and it's easy to forget something. Also, if it's possible, take a family member or friend with you, they may well remember things, as it can be a lot to take in.

 

If your symptoms are really bothersome for you, there are medications that your GP can prescribe whilst waiting to see the neuro.

 

Hope all goes well for you, any questions, or just a chat, someone is usually around.

 

Pam x

[Rachel29]

Thanks nick :)

 

Thanks pam. I do have a list and regarding medication I think I've tried near enough everything and it doesn't help :(

[Scully]

Hello Rachel, and welcome to the forums.

 

You have been given sound advice from Nick and Pam thus far.

 

With you list for the neurologist, do try to add the start date of each symptom, more importantly how long each symptom lasted.

For example.

Tingling all over - started on ............lasted for/ ongoing.

 

As has been said, there is no easy way to diagnose MS. The neurologist will go through your symptoms and medical history.

Then they will perform an examination ( nothing too scary )

Then they may order some tests. MRI, lumbar puncture, and some electronic tests on eyes and muscles etc...

 

Unfortunately, is can be a long process and we have to be patient while the neuro team look at results, build a picture of what's going on and make some decisions.

 

Meantime, stick here with us, ask questions, and don't be afraid to ask about any worries you may have. It's important that you can 'speak' to folks like us, who can draw on our own experiences to try and help you through this maze.

 

Scully

 

 

[ptlike]

Rachel

I can't add any better information than nick, scully or pam, but wellcome and I hope all can be resolved soon.

Best wishes

Peter

[Rachel29]

Thanks so much guys for the responses. My docs are chasing up the lumbar Mir results as they first thought I had a herniated disk in my back and one in my neck that's been causing this tingling. I kind of hope that's what shows but as its been 5 weeks my doc thinks I should of heard something by now as has then said that this could be another option. She put the referral through on the first and she has also requested for a brain mri aswell. So up to now it's just a waiting game. I've had this tingling etc for 12 weeks now non stop it's driving me crazy and I've tried nearly every nerve pain killer and nothing is happening to help ease it off. But at the end of the day what will be will be and I know If it turns out its ms then I know I'm not the only one and help and advice is always given from people like yourselves so thanks guys :) x

[Stumbler]

....I've tried nearly every nerve pain killer and nothing is happening to help ease it off.

 

Nerve pain, aka dysaesthesia, paraesthesia or allodynia , can not be treated with normal pain killers. Anti-convulsants, e.g. Gabapentin or Pregabalin, are used. https://www.mstrust.org.uk/a-z/altered-sensations

 

[Rachel29]

Thanks I've tried tramadol, carbamazepine 100mg twice a day , gabapentin 300mg 3 times a day, pregabalin I was on 50mg twice a day n now upped to 150mg twice a day and amitriptyline 10mg 1or2 at night. I'm still taking the pregabalin and amitriptyline at the moment and apart from making me feel dizzy nothing :( I'll give that link a read though thanks x

[Marina]

Hi Rachel and welcome to our forum

 

As an aside to previous replies, I hope they hurry up with getting the results of your lumber MRI. It’s possible your sciatica-like pain and lower back stiffness might be separate to your other symptoms. X-rays tend to show far less than an MRI, so it’s important to know what the MRI might show.

 

I’m someone who has separate spinal issues, with sciatica-like pain (also in my right side) which can go right down to my foot, and with very painful lower back pain. I have several degenerated discs and also lumber spinal stenosis which are the cause of my sciatica-like and lumber pain, as well as a few other lesser spinal things (and osteoporosis to boot!). My pain as a result of the stenosis is, however, severe. No pain killers help and I’ve also had 3 or 4 lots of spinal injections which didn’t help much. I’m not saying you might have anything as severe as I have, but it could be possible that something’s pressing on a nerve causing your leg/back pain, like maybe something to do with facet joints rather than a herniated disc.

 

I also have cervical spondylitis (or maybe it’s spondylosis, I get confused between the two) which gives me neck pain.

 

According to my pain specialist, it can sometimes be a bit difficult to tell the wood from the trees as my MS can exacerbate my spinal problems and vice versa.

 

Just to confuse issues further, this link on the MS Trust’s site about pain in general - https://www.mstrust.org.uk/a-z/pain - says:

Musculoskeletal pain (nociceptive pain) is caused by damage to muscles, tendons, ligaments or soft tissue. Musculoskeletal pain in MS feels like the pain from common injuries unrelated to MS, such as a sprain or pulled muscle.

 

Examples of musculoskeletal pain are:

 

- Hip and back pain caused by alterations in how you walk due to MS, possibly because of muscle stiffness (spasticity), weakness or problems with balance.

- Back pain due to sitting for long periods because of fatigue, walking difficulties or inability to stand for long.

- Muscle or joint pain due to changes in posture, spasms or muscle stiffness (spasticity)

 

Good luck and please let us know how you get on, and don’t hesitate to keep asking any questions you might have or chat to us about anything

[Rachel29]

Hi guys after waiting for 5 weeks and a day for my mri results for my lumbar I rang the docs again today to see if the results have come back in to be told no. So the receptionist told me to ring the hospital to chase my results. After numerous phone calls I managed to get through to the right person who told me my results are at my docs on the nhs.net site but when I ask when they were sent over she "couldn't" tell me. So I rang my docs back and after me pestering they found them and we're waiting for a doctor to look at them and phone me back which if it wasn't for me saying how scared I was about the results it would of been tomorrow. So finally I've just had a call back saying the doc has looked at them and has asked for a routine appointment which is normally 2-3 weeks later which luckily I managed to get one for fri.

 

I'm now wondering if my lumbar mri has or hasn't found any herniated disks etc which was the original diagnosis with her asking for a routine appointment?

 

My head is up my backside with worry as at the mo I've had the neurologist and brain mri referrals gone through.

[Scully]

Hello Rachel,

 

It's really shouldn't have been that difficult to obtain the results after all this time, unfortunately it is sometimes the case that one has to call round and gee everyone up a little.

 

If they've only asked for a routine appointment, it could well be that the results are not remarkable....but given your GP history, who knows.

 

Try calling the docs again. My surgery will offer a telephone call from a doctor if I ask for it. Maybe say something like..

" I don't want to waste an appointment by coming in to see the GP, so, could you ask for a GP to call me and discuss the result ?" You could add perhaps that you aren't feeling well enough to make the trip to them ....

 

Was the MRI just if your spine...if so, why did they do an LP as well. It's a brain MRI they need, I assume that's what's now in the pipeline for you?

 

Scully

 

[Rachel29]

I had the mrion just my lumbar because originally the doc thought I had a herniated disc. I've managed to get at half 3 today so Gona get my results

[Scully]

Good luck with the appointment today.

Whatever the GP says, perhaps you could also ask to have your brain MRI appointment and neurology appointment chased up as well?

 

Scully

[Rachel29]

Hi sorry I've not been on since. I have apparently a slight bulging disc between my L4&L5 but she said it shouldn't be causing as much tingling as I'm having but she still wants me to keep the other referrals because it doesn't explain the symptoms top half of the body. I honestly think it could be a slipped disc in my neck but after speaking to my mum she booked me in privately with a neurologist next week so will know more by then :) x

[Marina]

Your slightly bulging disc between L4 and L5 is probably what's causing your sciatica and lumbar pain. It's likely to only affect your lumbar area and right leg. Your doctor's right in that it wouldn't be causing tingling/pins and needles all over or the symptoms in your upper body.

 

If you had a slipped disc in your neck, I suspect you'd be getting a fair amount of pain from it. Do you have neck pain too?

 

Good luck with the neurologist, and please keep letting us know how you get on

[Rachel29]

Not so much pain it aches a lot. I've had a copy of my Mri tho. I don't just have the one bulging disc if I'm reading it right.

 

 

Clinical history: tingling sensation in lower limbs from hip downwards. Intermittent back pain.

 

MRI SPINE LUMBAR/SACRAL.

 

Mild loss of disc height and disc hydration is noted at L4/L5 & L5/S1 levels.

 

At L3/4 level, there is no evidence of disc protrusion The central canal is normal in size.

 

At L4/5 level, mild disc bulge is noted. The central canal is normal in size.

 

At L5/S1 level, minor disc bulge is noted. The central canal is normal in size. Minor right foraminal stenosis is noted.

 

The vertebral bodies are normal in height. The vertebral alignment is normal. Normal conus.

 

(My doctor just told me I had a slight bulge in L4/5 am I right in thinking its abit more then just that one )

 

[Marina]

"At L4/5" and "at L5/S1" basically means L5, with one end of L5 below L4 and the other above S1 (as S1 is the next one down from L5, "L" stands for "Lumbar" and "S" stands for "Sacral"). So, yes, it is basically just that one, L5.

 

I wouldn't worry about references to "minor". If there was anything they thought might be causing any of your symptoms, I'd have expected them to mention it in their first sentence (eg, where they say "Mild loss of disc height ..").

 

I think it would be a good idea to take a copy of these results with you to give to the neuro you're seeing next week. Let him know if you get tingling and pins & needles in your legs when you're not getting the sciatica-like or lumbar pain, and if you get them in one or both legs. If you do get them in both legs, it's less likely to be due to a lumbar disc but not impossible. Any tingling/pins & needles not in your legs won't be due to any lumbar disc problems.

[Marina]

I forgot about your neck, sorry...

 

If it's just aching, do you get migraines or other headaches, or even facial pains? Might it be possible that you're adjusting your posture due to back/leg pain? Do you use your computer/tablet/phone a lot?

 

If your neuro suggests a brain MRI next week, ask him if he could extend it to your cervical area - that's if he doesn't suggest a spinal MRI as well as brain, as a spinal one would cover the cervical area (although sometimes brain ones cover it too).

[Rachel29]

Hi guys well I saw the neurologist and I've just received his letter to my doctor. He has written:

 

possible central nervous system demyelination

Plan brain and full spine mri.

 

Also cutting it short as it is a long letter it says there is a possibility basically it could be a viral infection that has effected the spinal cord.

Her cheeks remain tingly and the arms although this is a ulnar nerve distribution and I suspect may be a red herring.

I do not have symptoms suggestive of L'hermittes phenomena and there is no history of uhtoffs phenomenon either.

There is no history suggested of optic neuritis.

On examination assessment was completely normal. Her pupils were equal and reactive to light. Her right disc appeared a little paler then the left although she has a mild cataract on her left ( congenital) lower cranial nerves were normal. Power was grade 5. She does have very brisk reflexes throughout but finger jerks were not present. Hoffmans sign was negative.

 

Her right plantar was mute but the left plantar was flexor. There was no objective sensory signs other then a classical ulnar nerve problem at the elbows although tinels test was negative.

 

I agree in this situation we need to consider central nervous system demyelination. It is reassuring that the examination is relatively normal I am uncertain of the significance of the slightly paler right optic disc and brisk reflexes.

 

If there is evidence of inflammation I wouldn't recommend and specific treatment at present as her symptoms have now been with her over 3 months and she hasn't deteriorated.

 

If the scanning does show and abnormalities this would not confirm multiple sclerosis as by definition an individual with multiple sclerosis has to either experience a second episode or progressive white matter changes in serial mr scans. I have thus categorically informed her she does not have ms at the present time.

 

Any ideas how this sounds :/ thanks for reading.

 

[Nick]

Hi Rachel,

 

While having MS for a number of years I can't say I'm any kind of expert on medical technicalities. I do know that the task of a neurologist is complex and highly skilled and what has been written here is 'qualified' to give your present assessment. In fact it must be a very positive summing up saying that (in all probability) MS is being discounted. Less positive is the fact that you clearly still have no firm diagnosis. That said you should look upon it as the specialist discounting a number of things. We somehow all expect to be told what is wrong with us, however where issues of the Brain and nervous system are concerned this is not always possible due to the huge complexity of this part of the body. Interestingly enough my own first diagnosis having experienced Optic neuritis was equally nebulous with the possibility of viral infection or toxins being suggested. It was only after further events a number of years later that any kind of firm diagnosis became possible.

This is the problem. Even where a diagnosis of MS is given it will not allow any probability of just how things will develop, we are all different.

 

I hope that helps, I feel it is more positive than negative.

 

Nick

Edited 28 Aug 2016, 9:58 am by Nick

[Marina]

I read “possible central nervous system demyelination” as maybe meaning “possible MS”, as MS is the most common cause of central nervous system demyelination. Consequently, he’s suggesting you have a brain and spinal MRI - I imagine to look for lesions consistent with MS and to rule in/out a viral infection of the spinal cord (I’ve no idea how the latter is diagnosed).

 

Not everybody with MS has L’Hermittes (spine tingling on pulling your chin down to your chest) or Uthoff’s (symptoms worsening with heat). And not everybody with MS has optic neuritis either. It just that these can sometimes be early symptoms and means you haven’t shown indications of them.

 

I’m guessing that when he says he wouldn’t recommend specific treatment, it’s because you haven’t yet got any kind of DX, so he wouldn’t be able to offer a treatment without knowing what he’s supposed to be treating. However, if you do end up getting a diagnosis of MS, then you should immediately be offered a DMD, as the trend these days is that the earlier after DX one starts on a DMD, the better.

 

He’s right in that he can’t tell you have MS “at the present time”, as a) you haven’t had any MRIs or other tests yet that confirm it, and b) people need to have at least two attacks spaced out by time before they can be diagnosed.

 

On the whole, I’d say you’ve been very lucky and have fallen on a good neuro, regardless of whether he’s an MS specialist or not. It sounds like he’s listened to you and is paying attention. Not many neuros, even MS specialist ones, will suggest both a brain and spinal MRI - they should, but they don’t.

 

Basically, it sounds like he’s saying he can’t tell you that you do have MS and he can’t tell you that you don’t for sure. He’s suggesting that it’s possible, or that a spinal viral infection is possible, and that you need an MRI to start with; and if the MRI is not conclusive of MS, then to wait and see if you get any new symptoms (“attacks”) and/or worsening of existing ones. If you should get any new or worsening symptoms, then to follow it up.

 

Rachel, you’re being very brave going through all this. Being in what we call “Limboland” - doing the rounds of doctors and having no diagnosis - can be a very distressing time, wondering what’s wrong and waiting to find out. You sound like you’re coping very well with it.

 

Please do keep asking us anything you like, we’re always here to listen and to try to help where we can.

[Rachel29]

Thank you for your responses. That have really helped. I am being positive because at the minute I have to look on the good side that no news is good news and I'm not even 30 yet with 3 children so I always have something to keep my mind busy. On the down to side the only thing that gets me down is mainly the tingling and shooting stabbing pain in my legs. It has been nearly 4 months now constant I just hoped it would ease off a little :( I know it sounds a little silly for me to ask but I don't really know or understand any of this if I'm honest but is it possible that nothing can show on the mris at all with me only having these problems for a few months. Just by what I've been told and peoples advice etc I know it has taken a while to be diagnosed. I have read up on him saying I have very brisk reflexes but I'm unsure on what it means with having no finger jerks and with my plantor one flexor one mute? If anyone knows. Thanks x

[Marina]

“Left plantar was flexor” means it was normal as your big toe pointed down. “Mute” probably means the toe on your right foot didn’t move in either direction.

http://www.mult-sclerosis.org/Babinskisreflex.html

http://www.healthcentral.com/multiple-sclerosis/c/19065/129049/signs/

 

Having very brisk reflexes can be for various reasons or can be normal. He says himself that he’s “uncertain of the significance of the brisk reflexes.”

 

It’s good to have these notes, for when you have your further investigations.

 

It is possible that the MRI might show nothing or be inconclusive. If the brain and spine MRI show nothing, it might be a matter of waiting for things to get worse or having new symptoms and then having another MRI to see if it shows anything new, if the neuro or your GP continue to think it might still be signs of early MS.

https://www.mstrust.org.uk/a-z/mcdonald-criteria

 

Are you also being referred to anyone for your separate lumbar pain problem?

[Rachel29]

Thanks for the links I will give them a read. My gp wasn't really interested she just palmed me off with tablets every time so I will probably go back to the neurologist. At the minute no for my herniated discs and forminal stenosis. He wants to scan the rest of my spine to see if something else is causing the tingling in my legs. No painkillers are shifting it so that's why he seems to think it's a nerve problem x