Potentially MS (Updated)

New diagnosis and before diagnosis
1

Hi all, I’m new to the forums and have found this board really comforting, as in I’m not alone with my situation. Sorry if this post gets quite long but I’m prone to waffling and not always very good at saying what I want to in few words. Thank you in advance if you get to the end :slight_smile:

In November I randomly woke up with vertigo. The only other time I’ve had this was with a deep inner ear infection so following a feeling of fullness and fatigue I went to my gp. To cut a long story short they couldn’t find anything but I was given antibiotics due to the continued pain which had spread to both my upper and lower jaw by this point. I also had a dental x day during this time which was clear. A few days later I had nerve pain not only i my face but up my head as well. It was only on my right side and I could more or less map my nerve pathways the pains were so intense and specific. I was diagnosed with trigeminal neuralgia and a few days later it disappeared just as mysteriously as it had arrived.

Six weeks later I awoke with vertigo again. I went back to my go as I was struggling to continue as normal it was so bad and was given prochloperazine? to help. It did help after upping my dose and finally after a week it went away again. A week or two later I developed a random itch on my hip area and forearm. It went away a day or two later but the area on my hip is now still numb weeks later (the arm area felt like I had sunburn under the skin for a few days recently but now seems back to normal). After another period of normality for 5/6 weeks the vertigo returned. This time I woke up with a stiff neck and thought I’d slept funny. I went to empty a mop bucket in my toilet and nearly ended up in there head first myself so I went back to the gp where this time she did a balance test (can’t remember the name) and she had to stop me from falling over. She referred me for an x ray of my neck in case it was disk related, x ray was all clear. A few days later my left arm started feeling tingly it then spread down to my left leg. I was also having some blurred vision and sometimes ghosting too. I went back again and this time saw a different doctor. She did some sight tests and reflexes. My knees in particular were very slow and the left had to be attempted a couple of times to get any response. Following this and my recent bouts of vertigo and trigeminal neuralgia she referred me to neurology. She said that she had concerns regarding MS.In the meantime the tingling spread to my right leg also and my left arm and let became really weak (i was having to leave cards on the full in shops because I couldn’t hold more than 1/2 for any length of time) so I rang to find out the waiting list for neurology. I was told 9 months so I started to find out about private appointments. I had bloods scheduled at my GPS anyway so I spoke with her regarding the waiting list and possibly an m ri inbetween. I’ve been lucky that my gp is sympathetic and has requested both a brain and spinal mri in the interim as she had marked my referral as urgent and was surprised I’d therefore have to wait 9 months.

That leads up to today where I am awaiting an mri and questioning possible MS. I already have a diagnosis of Fibromyalgia and it makes me wonder if I have both or if I’ve previously been misdiagnosed. I have had tingling and numbness in my left arm before as well as a large area on my torso that again felt like sunburn under the skin. I’ve also had feelings like insects crawling on my legs or water running down them and always attributed this to the fibro. One thing I’m wondering is are my recent bouts of symptoms too close together for something like MS? I also thought reflexes were normally hyper with ms as opposed to slow or missing? Any replies gratefully received and thank you if you got this far :slight_smile:

2

Hello Penelope

You do sound like you’re in a bit of a miserable place at the moment. A 9 month wait for an ‘urgent’ neurology appointment is ridiculous.

But you have a slight problem, in that your GP basically isn’t able to diagnose MS and by mentioning it absent any real evidence it is perhaps a bit premature and makes you more worried and anxious than you might otherwise be.

I can see why your GP have now referred you for an MRI prior to the delayed appointment with a neurologist, but this question once you’ve had the MRI is who is going to read and comment on it. Your GP cannot. Only a neurologist can do that.

However, if you have the wherewithal to have a private appointment with a neurologist, then having had an MRI could work in your favour as you could request at the time of having the MRI a copy of the scans on a disc. You’re likely to have to pay for this, but that would be a fraction of the price of paying privately for the MRI.

The other very real issue is that now your GP has suggested MS, you are concentrating on that as a diagnosis. There are very many symptoms of MS that are also shared with other diagnoses, including of course fibromyalgia. So while you could see this as having been wrongly diagnosed with fibromyalgia, you could also consider that you either have neither MS or fibromyalgia, or that you have fibromyalgia alone, or fibromyalgia plus another disorder.

In general doctors, including neurologists, don’t start with a diagnosis and then have tests to rule that diagnosis in or out, they start with symptoms and history and then consider diagnoses. So having MS put into your head makes you feel that it needs to be proven or disproven.

And as for your questions about whether your bouts of symptoms would normally be further apart for MS, the general rule is that an MS relapse should last for at least 24 hours and either comprise new symptoms, or be more than a month since the last exacerbation of that/those symptoms. So your episodes could possibly be symptomatic of MS, or not.

Equally, reflexes are often slow or absent with MS, so your examination by your GP may not have ruled out MS, but the big question is whether the examination was as relevant as if it had been conducted by a neurologist.

I don’t see there’s any harm in having the MRI prior to a neurologists appointment, but trying to speed up the neurology appointment would do you at least as much good, in terms of having your symptoms considered by a specialist.

Best of luck.

Sue

3

Hi Sue, thank you for your reply and for answering my questions. I did ask the gp if she thought it could be anything like ms and she said she had concerns it could be something such as ms so I guess I said it but we’d both been thinking it (I don’t think she would have mentioned it had I not said anything and she did say she wasn’t qualified to diagnose something like that). Sorry I didn’t explain this initially. I have already looked into seeing a neurologist privately. It will cost £180 for an initial consultation. I explained this to my gp and I think in part it was why she agreed to refer for the mri. She did say however that if the mri showed up anything substantial someone would have to see me sooner than 9 months anyway but I am happy to see him privately first if need be as I’ve been told by his Secretary he could then refer me back to the local clinic for further testing anyway. To be honest, not knowing stuff is something I struggle with and the thought of spending 9 months before even seeing a neurologist would drive me nuts. Now I have a plan of action I’m ok about it all. I’ve got 2 young children and work part time so don’t have too much spare time on my hands to dwell. Thanks again for your reply, Pen.

4

Hi again, something I forgot to ask in my first post i was wondering if anyone can shed any light on. I know m s shows inflammation where there are lesions etc so brain/spinal cord. Does this inflammation tend to show on a blood test or not? The reason I ask is all my bloods have come back normal and just wondering if that then rules me out. Thanks again,

Pen.

5

Hello again Sorry, blood tests don’t show up inflammation on the nervous system. So the bloods being clear don’t rule MS out. Shame isn’t it? If MS could be ruled in or out with a straightforward quick test, it would make this whole process so very much easier. Sue

6

Thanks again Sue for clearing that up for me. Yes it would be so much easier if it could be ruled in/out with just a quick bloodtest lol. I may try ringing first appointments back to see how long I’ll likely be waiting on an mri. At least then I’ll have some idea of a timescale. Pen

7

Just to update…I rang the ultrasound department again this morning to try to find out the waiting time for mri at the moment and was told it was being reviewed and wasn’t back yet. On my dinner break in work I got a call saying they’d had a cancellation on Sunday and did I want it. I wasn’t expecting it quite so quickly but at least I can get this part out of the way. Apparently it’s in the mobile scanner though because they are having work done o r something. I’ve heard different machines are more sensitive than others. I believe it’s a 3 something or other. Does anyone know if this is sensitive enough to pick up lesions, inflammation, etc?

Pen.

8

I think it depends on the age of the machine, also they wouldn’t do a scan if it wasn’t sensitive. At least you are getting nearer to the diagnosis of what it may be. There is one thing and that is you can get a MRI which they put a dye in through your arm which highlights the legions. Are you getting a head and spine MRI.

You are really lucky that you got a cancellation, have you had one before, they are very noisy. Also have they asked for a blood test and lumber puncture, both help with working out what it could be, it’s not always MS.

Good luck on Sunday.

Kay

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Hi Kay, yes I’ve had bloods done. All normal. Not been referred for lumbar yet but gp did mention it. Yes my gp requested both brain and spine mri. I don’t know if she requested dye or not, I hope so. I’ve read that they are really noisy, do they always offer headphones or is it worth me taking cotton wool? I know my symptoms could be various things I just want an accurate diagnosis and hopefully not have to have tests repeated. Pen.

10

Hi Penelope123

Yes they do put headphones on, really big ones, they also give you a squeeze ball which you can squeeze to let them know your not happy, they do talk to you while the scan goes on, they ask you to hold your breath and things close your eyes as the doughnut is very close to your head, some hospitals they let you bring a CD which they pipe through to your headphones. Mine didn’t, you could ask for some music. (I didn’t know)

They often do a second MRI but not to close together, take out all your ear rings wedding rings, watches, glasses bras and if you can have a skirt or trousers that have no metal, if you do they may ask you to change into a hospital gown.(lovely)

You won’t get the results until you see the neurologist as a neurologist is the only one who can tell you have MS. Also the lumber puncture is another tool that they use to check if you have MS or something else.

Good luck for tomorrow

Kay

11

Hello Pen

The fact that the MRI they’re using is in a mobile unit, doesn’t mean it’s a lower quality. It feel exactly the same to be inside the machine.

If it’s a 3 Tesla machine, that’s the best, possibly most sensitive type. Most scanners are 2 Tesla. I asked the radiographer at my last scan whether it really matters. He said not really. Sometimes they can do a better scan with a 3T machine, but they have to have someone really skilled to read the pictures. Often, they just use a 3T to do the same type of scan as in a 2T, just faster (which is good).

You always have headphones on, that way, the technicians can talk to you. It makes no real difference to the sound though. They are bloody loud. Often you’ll be offered music to keep you entertained, honestly there’s not much point, the MRI is so noisy.

Your head will be strapped into a sort of cage - this stops movement. The cage in particular, alongside the noise can make you feel a bit claustrophobic. But try to relax, keep breathing and keep your eyes shut. You have a rubber ball to hold that allows you to talk to the technicians. If you feel at all panicky, just press the ball. They can talk to you through the headphones.

If they done offer it, ask for a wedge for under your knees, makes it a bit more comfortable.

You might have a cannula put in your arm, so wear a top that the fleece can be shoved right up on. Wear warm socks, it can get nippy. As Kay said,make sure you have nothing metal on you - this includes bra straps and underwiring.

And just try to relax. I find the noise to be quite hypnotic and have fallen asleep before now!

Good luck, don’t worry though, you’ll be fine.

Sue

12

Thank you both your replies have helped to alleviate some of my anxiety. I know you mentioned getting the images on a disk Sue, do you know roughly how much they usually charge for this and whether it’s offered at all trusts across the board of but and miss depending where you are. Just wondering how much cash to take with me. Thanks. Pen.

13

I can’t see any reason why every hospital wouldn’t be likely to provide a cd with the images.

I don’t think it’s possible to say what each trust will charge though. I’ve heard people say £10, but I paid my hospital £25! But I paid with a cheque. So maybe take a checkbook rather than cash.

Sue

14

Thank you Sue. I don’t have a Ch equebook unfortunately but I’ll take £30 cash just to cover myself and hope they only ask for £10 lol. How long afterwards are results normally made available? I know a neurologist is only able to advice regarding ms but are there any other experts a radiographer may forward them to if they were to find something else that needed to be looked at or would they just refer back to gp for them to refer you on to relevant expert.

Pen.

15

I know I took the CD with me (and immediately shoved the disc into my computer to see nothing that meant anything to me!). I think the results of the scan will be looked at by a radiographer then sent on to the doctor who referred you for the MRI.

So you’d normally be getting the results from your neurologist.

Sue

16

Me again…mri went fine though they only did head and cervical spine. I can request the results in disk by writing i and they’ll then provide it. Apparently they don’t charge for this anymore. The results will be back with my gp in 1-2 weeks. I explained about having to wait 9 months for neurologist and that I was considering the private route. The receptionist advised me to hold off until after my g p had received my results as she said the radiologist would include a detailed report with the results. I’d planned on waiting to see gp first as I know she’d be happy to send for more tests depending on results before I make neurologist appt. I’ve been lucky to have a supportive gp and such a quick mri. Thanks for all the advice and support. Now back to the waiting. Pen.

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That’s great news hope things go well, now it’s the limbo time waiting for the results. I think sometimes you go forward two steps and then one step back. All the best

Kay

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Thanks for replying Kay and the well wishes. Fingers crossed they’re not too long sending the results over to my gp and then we can go from there. Pen.