I am newly diagnosed with Benign MS, and am having Pregabalin 150mg twice a day. Although this has helped with right sided sensations, the latest symptom to rear its ugly head is making me feel sick. Almost sounds laughable, BUT when I talk, I feel particularly sick with vibrations in the back of my chest ( more so if leaning against anything) . Also makes me want to cough as well, and I haven’t actually got a cough. I would ask an MS nurse, but I believe it can take ages until after referral to get an appointment. I would ask the doctor, but she has said that she hasn’t the depth of knowledge that a specialist nurse has, which is fair enough. I did have an ECG a few weeks back, so it shouldn’t be anything to do with that. Has anybody had anything similar and give me any advice or information as to how to stop or minimise it? Thank you for any help .
It makes me angry (not with you!) when people say they are newly diagnosed with “Benign MS”, as such a diagnosis can only be made retrospectively, after ten years or more with minimal problems.
Nobody can say at the outset whether somebody’s MS is “benign”, as that is in the lap of the gods.
However, it does seem to be a trend at the moment, for consultants to say this - or perhaps it’s just one or two consultants, who keep saying it to lots of people.
I’m sure it’s meant to be reassuring, but it has no medical basis, and can also have the negative impact that people told it is “benign” feel they ought to have no symptoms, or that if they do, they shouldn’t moan, because they don’t have “proper” MS. MS is MS. No diagnosed person should be left with the impression they’re making heavy weather of it, if they have symptoms, because their disease is “benign”.
Anyway, back to the buzzing. I’ve never had it only on speaking, but do often get buzzing after coughing, which makes it difficult to tell whether I have a chest infection. In fact, I’ve been to the GP before, in case of an infection, but explained I couldn’t tell if it was wheeziness, or neuropathic stuff. She could not hear anything with the stethoscope, so we concluded it was the latter.
It could be worth asking the GP and the MS nurse. The GP to rule out the obvious chest infection. If the GP finds nothing wrong, then book the MS nurse, even if there’s a long waiting time. It’s unlikely to be anything dangerous, if the GP confirms there’s no infection, but still extremely distracting and annoying. I find it annoying enough when it’s only if I cough - certainly don’t think I could put up with it every time I spoke.
It may be possible to calm it down with a different combination of meds.
I’ve never spoken to a neuro or MS nurse about mine. With it only being after coughing, I’ve tried to tackle it instead by reducing coughing - I have a load of pastilles and throat sprays to reduce the dreaded itch.
I’m slightly asthmatic, so having a bit of a cough is unfortunately the norm for me, and can be aggravated by smoke, strong smells, and coming into a warm environment from a cold one. But the buzzing afterwards is a relatively new thing, and I’m 99% sure is linked to MS, since the doctor couldn’t find evidence of infection - which was the other suspect.
Thanks for the reply Anitra,
I too hate the word benign as it feels anything BUT! I was diagnosed in 2003 with Optic Neuritis after presenting with a blind right eye and face numbness. the eyesight was treated with IV prednisolone and came back quite quickly, although left me with Pulfrichs phenomenon, something that I have eventually learned to ignore. The consultant told me then that it was probably the start of MS. So in a way, this hasn’t come as a total shock, but I still feel IN shock if you know what I mean, as the symptoms are definitely worse and different. I understand ( and have currently) the fatigue which is out of all proportion, the staggering walk, forgetfulness, but am having trouble with that buzzing, when talking mainly. Its very annoying/upsetting, as I haven’t got a cold or chest infection, its the buzzing/vibration upon talking that makes me want to cough rather than the other way around. It feels a bit like when you cough after a few heart palpitations. I do hope that it wasn’t up to me to book the MS nurse, as I was under the impression that the consultant was doing that. He must be, I think, as he didn’t say who she was. I took my husband to the appointment with me, as at the moment, information is in one ear and out of the other! Find it difficult with dexterity too, so many thanks to spellcheck, not that it is infallible! So sorry to hear that you are asthmatic in addition, as if one of these things wasn’t enough. Anyway, I really appreciate you answering me, whilst I don’t wish this on anyone else, it does help to share ( it helps me anyway), so thank you.