At a crossroads

New diagnosis and before diagnosis
1

Hi, new member here. I have joined as I am at a crossroads with my life and illness. Around 9 years ago I was diagnosed with Chiari Malformia and Syringomyelia after years of diagnosis by both NHS and private of a “trapped nerve”. It took around 4 years to get them to agree on an MRI which immediately showed the syrinx and the chiari. After a few years of relative stability with regular checks, I started to have longer periods where symptoms persisted, to the point where I had a 24/7 constant headache (migraine like, and back of skull base), this is when I was sent for decompression surgery after an MRI showed some further issues. On that MRI scan around 5 years ago, it also showed that multiple lesions had formed on the brain (around 7), which concerned my neurologist enough to refer me to see a specialist on them.

After surgery, and being told there isn’t much the Chiari specialist will do now, I was referred to an MS specialist. After seeing them a couple of times over a couple of years, and despite MRI scans showing increased number of lesions every time as well as symptoms aligned with MS becoming more persistent and continuous, they informed me that they were happy not to see me again unless symptoms got worse, and that they were unsure whether symptoms were based on the chiari or anything else, basically not committing to a diagnosis. At this point I gave up, both with the Chiari, neurologists and with the NHS in general, I felt like I had been swept aside completely.

Roll on a couple of years, and I am at this point where my symptoms are daily, my life is a wreck, I can’t face the outside world, and without my family and wife, I’d have no reason to go on. I got back in contact with the neurologist, and after a struggle, despite saying they would see me no problems if there was any changes, I have an appointment a week today, after a recent MRI.

Sorry for the whiny long post, I do apologise, and I have not gone into the symptoms as it would nearly triple the length of the post, but I want to ask if anyone has had something similar happen. I could be a hypochondriac on this, but I feel like I am not getting a diagnosis solely based on a separate issue/condition.

Once again I apologise if this is too long, or that it is in the wrong place.

2

Hi - My experience is something similar and I can only put it down to the fact that the NHS staff are overwhelmed with work…after having sat in front of many specialists/Consultants I think that in common with pretty much everyone you see in the NHS - and private practice too as I have done both - they a) only deal with what is under their nose on the day b) They very rarely read your notes before you go into the room and c) You really are just a number and your family and friends are your true support network. Obviously we rely on the medics to get that side of things sorted but it is truly glacial in pace - hopefully you’ll get some answers next week, but don’t hold your breath they will probably want you to have more tests. Good luck.

3

Hello

It must be quite difficult for doctors to see past an existing known condition / past diagnosis to diagnose purely on the evidence seen today.

I expect it’s even harder for you to get doctors to see past Chiari and Syringomyelia and to consider the lesions you have in your CNS and the symptoms which could be suggestive of MS.

I hope that next weeks appointment is a) useful, and b) with a neurologist who can see you as an individual and not just as someone who has/had Chiari and syrinx.

Can I suggest that you ask about the specific lesions? Are they in the places where you’d expect to see lesions suggestive of MS? And are they demyelinating lesions? If so, would the neurologist feel comfortable diagnosing MS? If not, why not? What other evidence is needed for an MS diagnosis? Is s/he going to refer you for other tests? Ie lumbar puncture, Visual Evoked Potentials, nerve conduction? Others?

If the neurologist does feel that the lesions are caused by MS, does it appear that the MS is of a progressive variant? (This would appear likely, if it’s MS as you’ve said there doesn’t appear to be a relapsing remitting pattern.) What, if any, treatment might they suggest?

I do hope you get some answers next week, and perhaps regain some faith in neurologists.

Sue

4

Thanks for the reply. I’m not holding my breath as it is with the same neurologist as seen before, and he spent more time speaking directly to my wife than to myself, he wouldn’t make eye contact with me, was really creepy to be honest. I take notes with me and pass them on to the people, and still both he and his registrar didn’t look at them in the four prior appointments. Ia gree the care givers of the NHS are overwhelmed…not so much the admin though, but that a different matter.

5

Thanks for the reply. As mentioned in the reply above, it’s the same neurologist, and he seemed to be more interested in wife last few times than conversing with myself. I have asked directly about the lesions, and was initially referred to the new neurologist after my old neurosurgeon identified the lesions as demyelinated , whole reason why I was referred to the current neurologist.

I have lost faith in the NHS, not that I had much in the first place for many reasons, but I have nothing but good things to say about my intial neurosurgeon with the chiari, unfortunately he retired, and the person who performed the actual surgery was happy to offload me as soon as the decompression surgery was underwent. Which led me to the current neurologist who is at a more local hospital.

I thank you for the list of suggestions for questions, and have asked a few prior. Unfortunately, in prior appointments he was more interested in the chiari. I go into the appointment with zero expectations to be honest, other than to be fobbed off again and him to be unable to look at me/communicate directly to me.