A couple of weeks ago I had a further appointment with the consultant at my local stroke clinic, and after going through my scans in detail she does not see any evidence from these to suggest I have had a stroke to cause my speech challenges. Last week I had an appointment with an ENT consultant who was looking at the mechanics of my throat and palate functions - sticking a bit of fibre optic cable up my nostril for a good rummage around was such a joy!
But up to present, only the huge saliva pooling and dysarthria are the main symptoms - so we’re still hunting the cause, and waiting for the neurologist.
So, now feeling even more of a fraud. However, as I also have had epilepsy for the past 50 years or so, prime suspect for my dysarthria seems to be considering long term use of phenobarbital as a potential cause.
I guess I wasn’t expecting this, but have been trying to track down any research on the impact on the nervous system of this type of drug over years. If anyone out there has any thoughts about where to look that would be brilliant.
Hope everyone is still staying safe and well.
@RPB Im sorry to hear you haven’t had your answers yet it must be frustrating. I do hope someone can help or advise in some way soon. You didn’t say what sort of scan you had! In my experience CT scans do not give accurate images as do an MRI so if you didn’t have the MRI I would insist on having one. Good luck and hope you get your answers. Loraine
Hi Loraine - thanks for your message. I did have an MRI scan at my 1st appointment and an ultrasound of my carotids, and the consultant I saw 2nd time around went through it in detail - and as I was fond of telling anyone jokingly, they didn’t find anything up there. I know I shouldn’t joke about it, but I was greatly relieved about that.
The ENT guy was pretty thorough, and his suggestions were pretty positive - so onwards and upwards as they say. I guess the present horrendous NHS backlog is a reason why my neurologist hasn’t arrived yet.
@RPB thats great news, good luck hope you get some answers soon.
I had a cerebella stroke one year ago. It took the doctors a who week to declare I had had a stroke. I was on a general medical ward for two weeks before I was even put on a stroke ward. I was first classed with vestibular neuritis even though the whole f my left side was not functioning. It was a complete shambles and I’m now worried in case it happens again.
@janella69 welcome to our forum and sorry about your stroke and poor treatment. Same happened to me…
I am a migraine sufferer with aura but what I experienced was certainly not a migraine.
It has been recently diagnosed as acute left Cerebellar lacunar infarct I was aged 59 I’ve just turned 60.
I was very depressed, emotional and suffering with headaches and problems with the medication such as swollen ankles, on top of that the consultant will not admit I had the stroke the day I went into hospital 17th March as nothing showed on CT scan, however, I was discharged the following day with no medication and an appointment for MRI scan on 26th March which showed my stroke left back.
Then I was telephoned by the consultant who saw me in clinic on 6th April to “tag on her list next day at 12:15 for a catch up”. Which she insisted I hadn’t had a stroke on the 17th March but, said miraculously I had it when I was home between 19th March and 26th March before my MRI scan! She gave me medication and dismissed me with an appointment for November 2021.
I have since been back to A&E with problems twice and very distressed about the whole issue.
My daughter lodged a complaint and the consultant phoned me at home to ask why. I put the phone on speaker phone and give it to my husband to talk to her where I taped the whole conversation, she told my husband he should be grateful she treated me and wouldn’t listen to him. Continued to talk over him explaining I hadn’t had stroke on 17th March (again).
Next few days after telephone conversation we received a letter saying the same details. She’s very insistent cannot considering I know the difference between a migraine and a stroke the symptoms I went to hospital with were classic stroke signs.
I’m was very confused and shocked at my whole experience and guided to this website by my GP to talk to someone.
Don’t worry to much about it happening again as it’s a slight chance. Always remember to rest and don’t push yourself . Try breathing exercises or mindfulness I use it and it takes my panic feeling away.
Everyone on here are life savers. I wish you well and never accept when you know your right as you know your own body. Best wishes Loraine
I think the lack of diagnosis is the frightening part. My friends husband who is a retired GPwanted to know if I had been given that injection when I got into hospital and I couldn’t remember. He checked all my notes when I came out and was horrified that I hadn’t received it. As all this was happening during lockdown, my grandaughter was having massive confrontations over the phone with Drs. One minute they told her there was an old bleed on the brain. Next it was a new bleed. OMG our lives in their hands. The care in the hospital had a lot to be desired and I even had to ask to have my bed made. As my friend said your lucky you are verbal what about the ones that can’t speak up for themselves
@janella69 i feel the exact same my hospital is in Carlisle and I so don’t trust most of them or the staff. Take care
I was having a browse through a number of posts in the past week or two, and realised I’d not added my latest adventures with NHS services.
I should say first that the Dysarthria also has an allied benefit - Dysphagia (difficulty swallowing) - great so speech is impaired and mealtimes are such fun!
Finally on 22nd March my appointment with the Neurologist arrived - but not before my wife had had a run in with our own GP (who suggested we could go privately, by finding our own Neurologist), and difficulties fighting over the phone with various medical secretaries.
I have to say at this point, I would never have got that appointment if my wife had not fought so hard for me. I cannot thank her enough - she is and has been amazing.
So now we have a plan of action for what is now deemed to be a pseudobulbar paralysis brought on in all likelihood by medication I’ve been on for decades. So far the transition is hard, and weaning me off one medicine to another certainly has its impact on my physical abilities. Of course my speech impact makes for very tiring and difficult attempts at conversation - but luckily the Speech Therapy appointments have now been postponed - I wonder if that’s a euphemism for … going to be cancelled.
So far what I take from this ongoing experience is that you really do have to fight the NHS processes and management in order to get an appointment in neurology. In our area, it seems that we have one neurologist consultant for a population of just under 500,000 - which is surely a bit of a risk. In fact our local hospital trust does not even list a neurology department or service, with the nearest department in another trust area over 45 miles away.
Anyway - once I regain some of my old speech (I’m giving up on the idea of singing or whistling!), and less fatigue, I might put pen to paper on the topic. After all that’s something I was paid for before I retired.
But keep plugging away everyone - and thankyou all for your kind comments and thoughts.
Just a final thought - the ENT Consultant had requested one of those barium meal/swallow type X-Rays, but the Radiology Dept. turned this down, as I didn’t “meet their criteria”. I thought that they were their to provide the Consultant with support.
Mentioned that little episode to the Neurology Consultant - and her response was basically surprise - astonishment might be taking it a step too far. Ah the joys of the internal NHS market and integrated care systems.
@RPB aghhh very frustrating for you and your wife! We are supposed to clap our NHS but boy do us SS have to fight for every measly appointment! I’m really sorry you have had such a rubbish time.
I’m interested in what medication you had been on along time and what problems it caused you please? I wish you all the best in your appointments and recovery Loraine
Hi Loraine. Thanks for your kind comment.
I’ve been on phenobarbital for 50 years, which was the drug of choice for treating epilepsy back then - it was, and still is cheap. It’s this long term use that they believe has been the main driver, and there are a few more ‘targeted’ drugs around nowadays, which are apparently suitable for us more ‘elderly’ patients.
It seems there is not much difference between cannabis and good old phenobarbitals - at least in terms of ‘coming off’.
Still, at least I’m getting there with that aspect.