What do you think?

New diagnosis and before diagnosis
#1

hello, I’ve previously had some excellent advice from Karen and Jaqui etc and hope i can maybe have some more advice.

Last year (October 2011) I had ON in my good eye, saw MS specialist really quickly and then had 5 days of IV steroids. It did the trick and by and large my vision ok ish. I had a MRI scan with and without contrast 6 weeks after the steroids - it was clear. i had loads of blood tests - all clear and nothing unusual in my neuro exam. I was diagnosed with CIS and will see the neuro next march. I have the number of the MS nurse but, to be honest, my only meeting with her was awful. She was completly useless and told my husband to stop asking questions because she was scared! Maybe the others are better.

By and large I’ve been ok. I’m back at work fulltime (teacher) but since June things have not been so good. First my left arm went dead, really heavy like it didnt belong to me. I had terrible pain in my left hand. i saw a GP, he told me to ring the MS nurse, I did and she returned my call 3 weeks later. I was out and she left a message. So that was that.

6 weeks ago first my left arm went dead, then my right arm. My arms feel drunk. I’e developed a tremor in both hands - I notice it when I do something like typing. By the end of the day my arms feel like they arent mine. So, I went to a different GP, explained the whole thing again. She did a neuro exam and said I had brisk reflexes on my left side - what does his mean. She arranged a xray on my neck - thats clear. I’m back at the GP’s on friday and I really don’t know what to think. Although the neuro was good - I got treatment, I found him really difficult to talk to.

Is it possible the 5 days of steroids infleunced the scan? Is there any point to another scan?

Just wish I knew what it is (like everyone else I guess)

Sue

#2

Forgot to say I’m getting he weirdest elecrical buzzing feeling radiating from my neck and across my shoulders. Hence the Xray, but it was clear.

Sue

#3

Hi Sue,

As you were diagnosed with CIS even though the scan was clear, it shouldn’t really matter, to be honest.

It’s apparently been accepted by the neuro that you’ve had one demyelinating episode - because that’s what CIS is.

CIS isn’t a diagnosis of nothing. But a single episode doesn’t fulfil the “multiple” bit of multiple sclerosis. However, since then, you’ve had further symptoms that are suggestive of further attacks. This should have led to you being referred back to the neuro, as it may alter the diagnosis

The first doctor’s advice to ring the MS nurse was probably sensible enough, but he could not have known that the nurse wasn’t very good, or would take ages to get back to you.

I don’t know what the second doctor was playing about at, as I think the advice of the first one was actually better. You have already had a diagnosis of CIS, and new neurological symptoms should have at least have sparked the suspicion they were connected with the earlirt diagnosis. So I don’t know why you were sent off for a neck X-ray, as X-rays wouldn’t usually show if there was new demyelination. In a patient with no existing diagnosis of CIS, then an X-ray might have been a good first step, as a disc misalignment, pressing on the spinal cord could produce similar symptoms. But where the patient has already been diagnosed with CIS, it seems to me to be missing the obvious, to think new symptoms are caused by a disc compression.

I think you have two choices here, or maybe pursue both in parallel, and see which comes up trumps: The first is to try the MS nurse again, and don’t give up if you don’t hear for a while, or if she leaves a message. Follow it up! The second is to make clear to the GP that you’ve already had a diagnosis of CIS, you are experiencing further symptoms: you don’t want to wait until March before being seen again by the neuro.

One of these two routes should lead to you getting a neuro appt. some time sooner than March, and depending how that goes (I expect he’ll order further MRI scans), you may get a new diagnosis.

Electrical buzzing fellings are common but not unique to MS, so again, should have been spotted as a possible link to your earlier diagnosis. I’m afraid I have little confidence in your second GP (the one who sent you for an X-ray) as they don’t seem to have made any connection with your recent medical history at all.

The first doctor may be alright, but you need to make it clear that the MS nurse route hasn’t been working very well, and see if he will refer you to the neuro himself.

Hope this helps,

Tina

#4

Brilliant advice from Tina.

I had an episode of Transverse Myelitis and then had a “relapse” and my GP faxed my neuro giving details, and got me seen that week instead of keeping the appointment that I was due to have in 12 weeks time.

The neuro arranged fresh MRI’s and I am awaiting the results now.

(i dont have an MS nurse but as Tina says, your GP can still push for you)

Have a lovely weekend and hope you feel better soon.

Gillian

#5

Hi Sue.

Brisk reflexes basically mean that the signals from your brain aren’t getting through properly to your limbs - a sign of a neurological problem.

Tina’s advice is excellent - if I were you, I would do exactly as she suggests. Don’t just phone the MS nurse once, phone her every couple of days or even every day until she phones you back. Even the good ones tend not to get back to people straightaway as they have to prioritise their workload - so the people who sound like they really mean it (!) get answered first. Your GP can refer you to a new neuro if you would prefer it, or to the existing one (maybe he had an off day last time?). Whoever you see, make sure it is an MS specialist.

Good luck.

Karen x

#6

Thanks for the advice everyone- fantastic as always. I’ll go for both tacks I think-MS nurse and GP (though a different one I think!). Thanks for sorting it out in my head!

My last appointment with the Neuro and MS nurse really made me feel like I was a nuisance. I sort of decided that I had to be on my last legs before I went back there. Mad I know because I did get the steroids but it was an awful time. My husband doesnt help really - he is a fantastic man but over this he isnt helping, he excuses everything for bizarre illnesses and infections, so he puts me off going. I think I’ll go on my own - but that will upset him so its hard really!!

Thanks again - have a lovely sunday- I’m off to take my daughter riding, which is always lovely.

Sue

#7

karen, could the 5 days of steroids I had have any affect on my scan -ie could they have made any lesions less visable? My neuro was very good and a MS specialist, he just wasnt particularly friendly. I know that doesnt/shouldn’t make a difference it just adds to the feeling that I’m wasting his time.

Thanks again

Sue

#8

Hi Sue You have had brilliant advice so I won’t add to that but just wanted to say that often our OHs have terrible trouble coping with us suffering from a serious illness. They cannot easily face it and make excuses about the things it could be. It is because they really cannot get their heads around the fact that their wives have something that they may not recover from. It is not his fault but hopefully in time he will accept this and will become a lot more supportive. Just thought I would try to explain as this happens to so many of us. Teresa xx

#9

Thanks Teresa. True and kind words. I know he finds it really dificult. If I talk about the symptoms he finds daft excuses and if I lie and say “I’m fine, its much better” he thinks he was right! Its a really hard thing for all of us. Thanks for posting.

I’m going to follow the advice and then tell him when I’ve got an appointment. I’m not going to give him a long time to think about it.

Thanks again

Sue

#10

Steroids suppress inflammation which can make lesions smaller and therefore harder to spot, so yes, they could have affected your MRI results.

Kx

#11

Thanks Karen. Enjoy the rest of your day everyone.

Suexx

#12

Hi, quick update. I rang the MS nurses every day this week, left messages and also spoke to the secretary, she said it will be marked as urgent and someone will get back to me. That was Tuesday. Heard nothing. So I saw my GP on wednesday. He was really fed up with this sysytem - said he would write to and ring the neuro. He did that this wasnt the first time he had had problems with this dept.

So, I’ll carry on ringing and see what happens.

Sue xx

#13

Well done Sue - don’t give up. They will get fed up with all the 'phone calls and will soon sort you out. Teresa xx

#14

Another update. The MS nurse rang on thursday - very apologetic. Anyway I said that didnt matter - since she was ringing me now! I explained what was happening with my arms and she arranged for me to be seen in 3 weeks in the clinic. I was happy with that. Got back yesterday from work and there was a message on my machine, the appointment had been brought forward to next tuesday (she had had a think about it she said) Really happy with that. Thanks to everyone who encouraged me to make a nuisance of myself!

I’ll let you know what happens

Sue

#15

Hi Sue, I just wanted to add one thing that you may want to ask the neuro or MS nurse about. Many people have brisk reflexes and it doesn’t have to be something pathological but neurologists usually check whether relflexes are symmetrical (ie equally brisk or slow on both the left and right side) or not. So whilst brisk relfexes that are symmetrical may not be pathological I would think that the fact that your reflexes are asymetrically brisk (brisk on the left side only) is something to investigate further. I just think it really wouldn’t be a bad idea to follow up on this and ask why your relfexes aren’t symmetrical in their intensity.

Good luck for your appointment and very best wishes,

Caro

#16

Well, I saw the ms nurse today. She was very nice and I spent about an hour with her. I ran through all my new symptoms, she had a word with the neuro and I’m having a urgent scan in the next 2-3 weeks. I think thats the best possible outcome for me really. She didnt do a neuro exam so I dont know if my reflexes on the left are indeed brisk.

She did say a couple of things which confused me: twitching wasnt part of ms and tremors weren’t as well. She wondered if it was a problem with a disc in my neck. Well, I guess the mri might answer that one.

Its a full scan - head, neck and spine with /without contrast.

Is this a good outcome for me?

Sue

#17

She also said that the deep/ intense pins and needles i feel in my shoulders isnt part of ms??

#18

Twitching and tremors are common in MS. Pins & needles too. They all have alternative causes of course, but I don’t think the nurse should have been so dismissive. Best to speak to the neuro about them when you see him.

Good result with the MRI though!

Kx

#19

Good news Sue, Glad you’re getting the right help and having an MRI soon. Funny that she said twitching, tremors and pins and needles are not common in MS. Get her to read this forum. She might change her mind then! Lol. Teresa xx

#20

Hi Can some one help me on here, I have been told my MRI was non specfic and told I had Basilar Vestibular Migraine. Went to my GP and got a copy of the neuro’s report…Here is a sentence I would like someone to explain, because my GP could not tell me anything.

Her reflexes were brisk bilaterally, but symmetrically so and did not feel pathologically brisk. Her power with encouragement was normal although variable with some collasping element to testing…Bloods came back normal, although 2 had slight inflamation what does that mean?

jan