MS Yes or no? please help

New diagnosis and before diagnosis
1

Hi everyone- newbie here waves

I was reading numerous posts and thought everyone seemed so friendly so I thought I would see if anyone has any advice for me

In Oct 2011 my son was born premature and was in and out of intensive care up until Dec 23rd 11 - It was a huge frightening time and inbetween these dates I was diagnosed with hyperthyroidism which was awful - I am 23 now.

Between Dec 11 and now I have been having severe neurological symptoms unlinked to the hyper and been see by a neuro and many eye specialists and had a lot of tests and I am now stuck in limboland (seems pretty common) :frowning:

I understand MS isnt a simple diagnosis and I want the neuro to get it right but was reading the mcdonald criteria and think I fit it.

I have the following symptoms:

  • frequent blackouts *4-15 times per week on average
  • complete night incontinence
  • muscle wasting in right hand and nerve damage very weak arm
  • loss of balance
  • optic neuritis left eye (really bad have taken solu-medrol and 3-4 months to improve and hasnt completely recovered)
  • tingling and numbness, itching and burning and tearing sensations in both legs much worse on right side
  • blurred vision
  • severe exhaustion
  • symptoms much worse in the heat
  • i have a lesion on the brain stem found on MRI reacted to MRI so didnt complete gadlinium scans (do they detect more lesions?)
  • I have a slow response in left eye on VEPs? wasnt told what this meant
  • dizzyness (not usually related to a blackout? odd?)
  • severely foggy brain (cant think straight a lot of the time and do rather odd and dangerous things without realising)
  • tremors which are so severe I cant type or write (my hubby is typing this out)
  • difficulty walking (numb feet balance etc)
  • twitches in my hands and facial muscles mainly my eyes
  • difficulty swallowing food much chew much longer than before
  • recurrent infections viral and bacterial
  • loss of general strength expecially in hands
  • asthma since childhood become much worse in the last year
  • headaches
  • insomnia possibly due to prednisolone on 30mg per day now
  • for the last 4 days i have had severe muscle spasms in chest which moves up and down and feels like a really tight elastic band sometimes making it difficult to breathe which comes and goes - MS hug??
  • horrible vertigo
  • a materal aunt with MS

This is just some of the symptoms I can remember - it feels as if I have had 2 ‘flares’ one which started in all off and slightly improved then another when the Optic neuritis started.

I have been feeling reasonably okay compared from late november 2012 to very beginning of Jan 13 and the last 4 days have been feeling much worse and everything has come back again but more significantly- does this sound like another flare up?

The neuro wanted to do another MRI (last saw in november) but as I had a reaction to the last one, my chest blistered and was agony for 3 weeks, I am a bit frightened of another.

I had a LP about 6 months ago which comes back clear of banding? (sorry cant remember the name) but this isnt always definative right?

The VEP was abnormal and indicated a CNS problem but everything else has been fine I think.

I only had 1 lesion in my brain stem on MRI about 9 months ago but they said that not all could have been detected as I had to cut MRI short before gadlinium was administered.

The hyperthyroidism is slowly being treated i am slightly allergic to the carbimazole and suffer quite bad side effects so it has taken me a while to get into a good place with my endo and this.

I am stuck as what to do next.

My neuro doesnt have much time for me and I dont have an MS nurse as I am not officially diagnosed, they want to complete another MRI and as I havent done this yet my GP thinks ‘i have upset the system’ and this is why i havent/cant see my neuro at the moment.

I was almost diagnosed with MS in Oct 12 but they scrapped the official diagnosis when my Endo who didnt at the time know my symptoms said he believed all my neuro symptoms were thyroid related/

Since then i managed to have a good talk with my endo who has realised most symptoms are completely unlinked to the hyper. I havent managed to see my neuro since then to talk to him about anything. Or told him my ‘break’ in severe symptoms has restarted.

Does this ‘fit’ MS? Is this another flare up? Should i force another MRI?

If anyone has any advice i would greatly appreciate it and once again thank you for reading my message- I hope you all limbolanders get the help and answers you need very soon

Best wishes

Lisa x

2

oh and a positive pronounced babinski reflex?

dont know if this makes much difference?xx

3

Hello, and welcome! Although it’s probably the commonest question we get around here, what you’ve asked is unfortunately not a YES/NO question. You do have multiple symptoms that appear neurological, but that in itself does not imply it’s necessarily MS, as there are more than 100 lookalikes capable of producing similar symptoms. Add to that you have a known existing health condition that is, or at least has been, a suspect, and the picture gets even more complicated. You also have some symptoms that are either unassociated, or not typically associated with MS. For example, MS is not usually linked to blackouts (just about possible, but pretty rare), has nothing to do with asthma, and is not usually a cause of recurrent infections, with the possible exception of urinary tract infections (due to involuntary retention of urine), or, in some individuals, lung infections - caused by accidental ingestion of food into the lungs due to swallowing difficulties (which you do mention). Other than these specific types, MS is not associated with generalised vulnerability to infections. Despite being commonly referred to as an auto-immune disease, this does not mean the immune system is weak or not working. On the contrary, people with MS are sometimes thought to have an overactive or disproportionate immune response, which results in damaging mistaken attacks on myelin - the body’s natural nerve insulator - which of course is supposed to be there, and isn’t a hostile invader. I’ve never heard of anyone having an adverse reaction to an MRI before, as the only radiation it uses is radio waves - not usually harmful to human tissue, although they can cause a heating effect, so I can only assume you suffered some kind of burn. But this should be difficult, if not impossible, if the scanner is correctly operated. The only other thing I can think of is that the “radiation” is a bit of a red herring, and what’s actually happened is you’ve had an allergic reaction to something that was in contact with your skin during the scan. Did you ever get any explanation of what the problem was? Did they admit anything had gone wrong? I think what happened is exceedingly rare, and it should be in your notes if there is some specific reason it’s unsafe for you to have another scan. Is the neuro aware there were “issues” with your first MRI? I think, in your place, I’d want some explanation of what happened, and some reassurance that it can’t happen again, before agreeing to another scan. It doesn’t seem acceptable that you ended up with “burns” (I use inverted commas, because we can’t really be sure what it was), with no explanation. I would have thought there should have been an incident report into this! I do think MRI is the way forward, assuming you can get to the bottom of what the safety issue was, or is, as diagnosis of anything neurological is going to be extremely difficult, without access to probably the most sophisticated and widely-used diagnostic tool. In theory, an MS diagnosis may be reached on symptoms only (and the limited information derivable from the last scan), but in practise, great reliance is placed on MRI evidence, so it may be a serious obstacle to diagnosis (of anything) if you can’t get to the root of what the problem was with the MRI, and therefore can’t have another one. I’d certainly be highlighting that there was a problem, and explaining that was the reason for my hesitation to sign up for another one! If you decline the scan, without giving a reason, you are leaving the neuro’s hands tied, rather, so it’s worth trying to work with him and/or your GP or the Radiology dept, to find out what went wrong, and if there’s a way you can safely have another one. Tina

4

Hi Lisa, and welcome :slight_smile:

Tina’s given you outstanding advice so I’ve really nothing to add except to say that I used to work with MRI and passed the necessary tests to be allowed to operate the scanner, including all the health & safety stuff, and MRI does not cause burns if everything is correct vs standard scanning procedure. The only way I know of that this can happen is if someone has metal on their body, e.g. a metallic tattoo (some older inks contained metal), clothing containing metal or metallic make-up. If the metal cannot be removed, a damp cloth can be put over it to keep it from overheating.

If you wore a hospital gown and no bra (although even an underwired bra does not normally overheat - I’ve worn one dozens of times in a 3T scanner), then I agree with Tina that it must have been some sort of allergic reaction to something in the gown or whatever else was touching that part of your body. Alternatively, it was a delayed reaction to something you were in contact with earlier and just happened to come up while you were in the scanner.

Please do sort something out so you can have another MRI - perhaps arrange to wear your own clothing in the scanner if it might have been the gown - they should be OK with that if they check that what you wear has no metal in it and they know what happened last time.

Also, make sure and get your spine scanned if you haven’t already had it done.

Good luck.

Karen x

5

Hi everyone Thank you for your answers and support I really appreciate the time you have taken to reply to me and I am sorry if I offended asking a yes or no I didnt mean to imply this disease was simple with a straight easy diagnosis. My aunt who has Ms for 15 years now her symptoms also started with blackouts and I didnt realise it was a rare association. Can the prednisolone encourage the recurrent infections I started on them 8 months ago and have had 2 chest lung infections and shingles twice and a uti? I do have bladder issues with never feeling empty after using the toilet. The neuro has said that the shingles is sometimes related to Ms does this sound right?. I am not sure why I had a reaction in the scanner I removed my bra but have 24 tattoos varying in age from 10 years ago these shouldnt have metalic dyes right? and never thought it could have possibly been related to the gown although cannot under any circumstances wear my own clothes. I was never given an explanation just that my skin went very red in the scanner and I was really hot to touch although I felt freezing then discontinued the scan and sent me home it wasn’t until late that night the next morning it felt like extreme sunburn and covered in little blisters all over my upper chest. I had a brain and neck scan and the neuro wants me to have orbits brain repeated but I haven’t enquired about a spine mri. I will be sure to mention this to him. I also found another one of my symptoms is related to Ms …lehermittes (sp?) Is this common? I did suspect that the only way forward is another MRI I wish there was amother way although I would do just about anything to get a diagnosis my neuro has excluded many other similarly presenting conditions and has told me we are most likely to be looking at Ms to myself and my Gp. I just wish it could be confirmed or excluded for sure I guess that my only way to help myself is to have a full gadlinium mri of brain orbits and spine and just place a damp towel over my chest and hope for my best. Would this be my best option in your opinion? Many thanks Lisa x

6

Hi everyone Thank you for your answers and support I really appreciate the time you have taken to reply to me and I am sorry if I offended asking a yes or no I didnt mean to imply this disease was simple with a straight easy diagnosis. My aunt who has Ms for 15 years now her symptoms also started with blackouts and I didnt realise it was a rare association. Can the prednisolone encourage the recurrent infections I started on them 8 months ago and have had 2 chest lung infections and shingles twice and a uti? I do have bladder issues with never feeling empty after using the toilet. The neuro has said that the shingles is sometimes related to Ms does this sound right?. I am not sure why I had a reaction in the scanner I removed my bra but have 24 tattoos varying in age from 10 years ago these shouldnt have metalic dyes right? and never thought it could have possibly been related to the gown although cannot under any circumstances wear my own clothes. I was never given an explanation just that my skin went very red in the scanner and I was really hot to touch although I felt freezing then discontinued the scan and sent me home it wasn’t until late that night the next morning it felt like extreme sunburn and covered in little blisters all over my upper chest. I had a brain and neck scan and the neuro wants me to have orbits brain repeated but I haven’t enquired about a spine mri. I will be sure to mention this to him. I also found another one of my symptoms is related to Ms …lehermittes (sp?) Is this common? I did suspect that the only way forward is another MRI I wish there was amother way although I would do just about anything to get a diagnosis my neuro has excluded many other similarly presenting conditions and has told me we are most likely to be looking at Ms to myself and my Gp. I just wish it could be confirmed or excluded for sure I guess that my only way to help myself is to have a full gadlinium mri of brain orbits and spine and just place a damp towel over my chest and hope for my best. Would this be my best option in your opinion? Many thanks Lisa x

7

Sorry I posted this twice

8

Can’t be sure about the tattoos, but if you have a tattoo where you had the reaction, it could be the answer. I think metallic inks are still used in some countries so maybe it’s one you had done abroad?

L’Hermitte’s is pretty common in MS, but can occur in other conditions too. It’s generally caused by a lesion in the cervical spine.

You could try having a CT scan instead of MRI. It’s not as good, but it is definitely better than nothing.

If it has to be an MRI and it’s the radio waves or magnetic field and/or your tattoos that is causing this skin reaction, then you could suggest the damp towel AND lots of breaks: you could go in for a couple of scans and then come out to allow your skin to cool down before going in again and keep doing this until it’s all done. I think it’s much more likely to be a reaction to something on the gown than the MRI itself though! There are probably all sorts of rules about having to wear a gown to ensure that no patient takes metal into the scanner room, but given the previous events, I can’t see how there could be a problem with you wearing a pair of pyjamas without pockets (or something like this) - the radiographer can check that there is no metal in/on them.

Brain, orbits, cervical and thoracic spine MRI would take a long time. If you can’t work out what caused the skin reaction, you should certainly not attempt to do all of this on the same day and even then you should push for lots of breaks.

Good luck!

Karen x

9

Wow karen thank you so much for your advice I had a couple done abroad but on my wrists not my chest and they are uv tattoos so maybe that could have caused a reaction. I am going to push for a neuro appt soon as h was supposed to see me in december but I upset the system according to my gp so I have sort have been pushed out of line and agree to a mri using your advice of lots of breaks and a damp flannel and see what he says. Hopefully they will agree to pjs and we will be able to find out what is going on. The last 5 days I have had the worsening symptoms again and the l’hermittes and also an odd patch of skin on my hip and face which is completely numb and is freezing cold and feels wet like how your hands feel when you are playing with snow sorry for the bad description and all of the other symptoms have come back with a vengeance …so I guess the best option is to see the neuro asap. My neuro is specifically trained in MS Dr Richard Nicholas of st Marys hospital in London I am not sure if anyone has heard of him but he has pioneered a ms treatment or something my gp said so I guess I am in good hands if and when i get diagnosed officially. Does a family history increase your chances of getting MS as I couldn’t seem to find conclusive evidence online. Best wishes and thank you so much again

10

Richard Nicholas gets brilliant patient reviews and is very well respected in the MS world. You are definitely in good hands :slight_smile:

Having a family history of MS does increase the risk of developing MS, but not massively as genetics is only one of multiple factors involved in MS.

Good luck.

Kx

11

Hi. I’m still waiting for diagnosis but spinal doc thinks I have MS after at least 2 years of symptoms. I’m waiting to see neurologist but have 2 mri’s of brain and spine showing lesions and many neuro symptoms. I just wanted to say that my scans were difficult as I’m claustrophobic but my GP gave me diazepam which helped. I was fascinated by the burning sensations though. You have cleared something up for me, when I thought I was imagin ing it. I had a disc replaced in my neck and though it is plastic, the screws are metal, and now I know I’m not just a wimp, the burning was real. Thank You. I hope you get the answers you need. Thanks also for an excellent resource.

Min