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Confused and frustrated

Hi I have posted a couple of times before. I apologse in advance for the length.

I saw consultant in August who said my symptoms were highly suggestive of MS.  I went back the start of October and he thought I was having a mini relapse.  I had spinal MRI recently which shows I have a syrinx which is in the thoracic area (T4-T9).  I had brain MRI normal except ? increased signal to left optic nerve.  I have had a VEP done though which was normal.  My symptoms up until then had started with a dizzy spell in feb which then over a few months had terrible fatigue and fuzzy lightheaded feelings, stiffness and achey legs, tingling in toe, blurry vision mainly to the left eye periodicaly, shooting pains to left side of head and then prickling/sensitive sensation, internal vibrating sensations amongst other things. 

By the end of October I started to feel better and November I felt much improved had worked up to 10 mins on exercise bike was able to walk more etc.  I was just left with heat sensitivity but fuzzy/lightheadednes and fatigue were gone. 

Just over a week ago  I woke with funny sensations in both hands tingly/numb but not and pins and needly, this then after a day or 2 became just when tying at night and the tip of riht thumb more persistent and general unsteadyness and walking into doorways.  I also fell getting out of chair, my legs ache more again and feel like they are going to give way if I go more than about 5 mins walking.  I have also had a very starnge sensation of earthquakes  a few times (very scary whilst trying to shop) and internal vibrating at night and in the morning and increased urination with feeling of not going properly.  I saw my GP who prescribed prednisolone 40mg orally.  I felt worse saturday but have noticed today for the first time in months my legs didnt ache when I woke and feel a bit better in myself.  Is this dose enough to make a difference if were a relapse? 

 I have now had a copy of a letter to my GP from my neurologist which states that  the VEP being normal is consistent with his clinical impression that it is NOT demyelinating disease.  I am so confused.  He has implied all along that he thought it was MS and that the syrinx is not responsible for and does not explain all my symptoms. I should be happy it is not demylination but it is all just so odd and obviously I just want to know what it is.  I wonder if I should be worried about the periodic vision issues.  Some mornings or if I exercise I cant see out of my left eye or it is just not right usually fairly brief.  I think I just need a good scream.

Does anyone have thoughts? Thankyou for reading.

 

Syringomyelia is not something I know much about, but I would particularly want to know what is causing the visual problems if I were you because there is no way that a syrinx could cause them.

 

The VEPs thing is not as clear cut as the neuro is making out simply because it is not 100% accurate. It is possible for someone with optic neuritis to have normal VEPs and for someone with perfectly healthy optic nerves to have an abnormal result.

 

Has the neuro suggested treating the syrinx? Or suggested what might be causing your visual symptoms? And your Uhthoff's sign (the blurred vision with increased heat)? Seems to me that he has to address these things before he can assume everything is down to the syrinx.

 

Karen x

Thanks Karen your time is much appreciated. 

I have been on the phone to the secretary who had the consultant there.  They have arranged for me to see him on monday and he has decided that a lumbar puncture is not necessary but that I will need to have a complete new set of MRIs.  He said to stop the steroids but I am feeling better on them so feel reluctant to do this.  Any ideas what he could be thinking now? Should I ask for referral to an opthalmolgist?

The only advice I was given with regards to the syrinx was that I would need regular MRIs to monitor it's progress. I tried to ask if there was anything I should or shouldn't be doing and what it meant but have not really been given any answers.

Do you know if a 3T MRI is likely to be better or more helpful and if so where they are?  I am happy to try and round up the money if it looks like it might help. 

Katie

Hi there…am also searching for answers. Have you looked up neuromyelitis optica? There is a blood test for this which is 70% accurate. This responds to steroids and can produce symptoms you have described. Good luck Sarah x x

Hi Sarah,

I had the blood test for that a few months ago and I never heard so have assumed it was normal. 

The search for answers is a nightmare isn't it.  I never realised it would be like this thought they would just diagnose with something I didnt realise that neurological conditions left so many people without answers.   I hope you find some soon too.

Thanks

Katie

I think the neuro wants you to stop the steroids because he wants nothing to interfere with a good MRI result. This is because steroids reduce inflammation and inflammation contributes to the white spots on MRI. So if you stay on the steroids, lesions might be harder to spot. So, although it sucks, I would stop the steroids if I were you. You can always go back on them after the MRI if you still need them.

 

It's always best to see an ophthalmologist if you are having problems with your vision. They are the experts.

 

3T scanners are more powerful so they show up more detail. However, it's still possible to get some really excellent images on a 1.5T scanner if they set the machine to use thin slices. The standard slice thickness in NHS brain imaging is between 5 & 8mm. To get really good detail, it's necessary to have slices that are a maximum of 3mm thick. In the spine, the slices should be thinner still. So, you can always ask the neuro to send you to a 3T scanner, but it is actually more important to ask that he specifically requests thin slices (maximum 3mm in the brain and 3mm Axial in the spine). Thin slices AND a 3T scanner would be ideal though. There are private 3T scanners, but let's hope it's not necessary to get into that.

 

Karen x

I just thought maybe he was being awkward so thanks for clearing that up.  It hadnt occurred to me it may affect the MRI. I will not take the steroids for now then. 

Thankyou so much you have helped clear up so much for me.

Katie

Hi,

Just an update.  I saw my GP at the end of last week and he could see a mild nystagmus, said my reflexes were slightly quick, Rhomberg test was hopeless (his words on the letter), and ?pale left optic disk and right side is weaker than left. 

Then saw the neuro on monday who was much less forthcoming other than saying he couldn't see a nystagmus, he didnt do the Rhomberg.  He has sent the rquest for MRI of brain  as urgent and with contrast this time.  He says I can be reassured that there is nothing sinister as I had the one in August.  He has said my syrinx will definately not be the cause of my symptoms.  I asked about an opthalmology referral as I have also had a few episodes of double vision and eyes feel peculiar he said to go to the optician in the meantime but to not worry.  He also sent me again for all the bloods I had in August including the B12, NMO etc. He did not want to discuss what he thinks might be ca]using my symptoms at the moment. 

He also has completely changed his mind about the lumbar puncture and does not seem very keen for me to have one.  I am wondering if this is beacause of my syrinx as when I last saw I questoned him as he suggested I have one and he said no wont be a problem.

I am so impatient I just want some answers and to feel better.

Katie

Hi Katie.

The lumbar puncture takes fluid from around the spinal cord, so it shouldn't affect your syrinx. Not sure why he doesn't want you to have one, but I guess he's got his reasons.

At least you're getting a new MRI of your brain. I assume he means that it won't be a tumour or anything like that causing your symptoms because it would already been visible in August. Let's hope this new scan helps with new info.

A trip to the optician is a good move. If they can't explain your symptoms, they (or your GP) can refer you to an ophthalmologist.

Hang in there!

Karen x