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Nervous about synptoms

Hi All, this is my first time posting here. I’m hoping for a bit of reassurance.

I was diagnosed around 4 years ago with Restless Leg Syndrome, and it was around this time that I lost my sense of smell also. My diagnosis was pretty much a conversation with my GP at the time, and medication passed my way.

The mess have never really helped, and I’ve had to keep increasing the dosage.

My new GP decided to look further into my lack of smell and sent me to see a ENT consultant. In the meantime, while awaiting the appointment my GP decided that my symptoms warranted a visit to a neurologist as she suspected MS. My first consultants appointment has now been and gone. An MRI showed no major issues, however it showed a small ofloactory bulb which suggests nerve damage (possibly by MS?). I have been discharged by ENT with a result of “either a really back virus was had that killed all nerves in your nose…or it’s neurological…possibly MS”.

I now have my neurology appointment in two weeks.

My symptoms are spasms in my right foot and left hand. Extreme fatigue. Every muscle or joint hurts. I cannot walk 20 meters without severe pains in my legs and then burning intensely. I have shooting pains around my body for “no reason”. I have uriniary urgency. I also suffer with the restless leg style symptoms where I can’t keep them still because they hurt so much and feel like electric shocks are going through my body. I feel like my insides vibrate. I get dizzy and I fall occasionally…and can literally be over nothing! I can be forgetful and words that would always have come to me easily seem to escape me…probably one of my biggest frustrations. I do not have periods where this gets easier…these have been gradually building all the time, with new symptoms adding but not disappearing.

I dont have any issues with my eyes and do not suffer with drop foot.

Does this sound similar to any of you that are diagnosed with MS? I have a major issue where I worry about wasting people’s time…even though I know what pain etc I am in. The symptoms are really affecting me now…where I won’t go anywhere unless I know I can park close as I can’t walk far, I drop things that I carry and struggle to run to a toilet as I struggle to walk

So nervous about going to the appointment, can anyone relate?

Thanks in advance.

Beth

hi beth

just explain your symptoms, when they started and if they improve or worsen.

the neuro will arrange for certain tests.

don’t be nervous because everybody in the waiting room will be nervous too.

well you are allowed to feel nervous but you’re not the only one.

just look at it as an opportunity to get answers and hopefully treatment.

if you have someone who can accompany you this person can prompt you if your words dry up and help you to remember what the neuro says.

carole x

tell about all symptoms even if you don’t think they are relevant.

Hi Beth, I can’t add anything to Carole’s advice except to emphasise that you are not wasting anyone’s time. Your GP took the decision to refer you to a neurologist and she wouldn’t do that if there wasn’t a good reason. You obviously have symptoms which need to be investigated. Only by examination can the medical professionals provide you with the answers you are looking for. That is their job and you can walk into the appointment confident that you are there for a very good reason. Let us know how you get on. Best wishes, Anthony

Hello Beth

Clearly the Doctors you’ve seen don’t think you are wasting their time. So you should try and pit that feeling right out of your head. You’ve got symptoms that are making your life very difficult and you nee to have them looked at by a neurologist.

It would be pointless for any of us to say whether your symptoms are reminiscent of our own, you need the neurologist to do a full examination and if the results warrant it, further tests, such as an MRI.

Take with you to the appointment (along with a companion to prompt you and also to remember what is said), a list of the symptoms you’ve had together with some rough dates and how long things have lasted, assuming they’ve improved with time. These are the things the neurologist will ask you about. What has happened? How it affected you? And how long the symptoms lasted? Don’t be nervous of looking at your notes to remind you.

And try to remember what is said at the appointment. It’s very common to walk out of a Neurology appointment and have utterly forgotten what was said. This is one reason for taking someone with you.

Best of luck.

Sue