New and very nervous about symptoms

New diagnosis and before diagnosis
1

Hello everyone,

I’m new to this site hoping that you may be able to offer some advice/reassurance about the ‘scary’ situation that I find myself in.

I have been experiencing debilitating right-sided pain in my temple and down my face for almost a year now. The pain lasts for about 5 weeks at a time and then disappears for several weeks. This pain started after I woke one morning last July unable to move my right arm above my head - I was treated for a trapped nerve which took 2 months to resolve. My GP recently treated me for trigeminal neuralgia but the tablets he gave me had very little effect. I saw him last week and was in a bit of state and actually broke down in his surgery - consequently, he signed me off sick and I am due to see him on the 13th when he said he will make a decision about referring me to the hospital. He admitted he is a little stumped by it all especially because it goes away for several weeks.

The reason I was so upset was that I am also getting other symptoms now including left sided weakness in my arm mainly but sometimes in my left leg too. I have also developed tinnitus in my right ear and feel that I am having to ask people to repeat themselves more and more when they talk to me. Another symptom I now have is that I feel very lethargic with no energy what so ever, especially in my arms - this is accompanied by tingling and a feeling of warm water across them. I have also had pain in my spine between my shoulders.

Today I have made the effort to go out with my husband for a walk but felt very unsteady and at one stage, fell sideways against a wall. I also noticed that whilst paying for something in a shop, I didn’t let go of the coin between my finger and thumb like you take for granted and had to make a conscious effort to let go of it - the woman laughed and so did I and said it must be sticky.

I’m normally a person who copes with most things and tries to work through but this has kind of got the better of me and I feel very emotional and nervous about it all.

I’m not sure what to expect from next week’s appointment but wondered should I be asking to be referred?

Many thanks for reading and I look forward to any advice you can offer.

Alison

2

Hi Alison, and welcome to the site.

What a rotten time you’ve been having. Scary for you and the ‘not knowing’ what’s causing it makes it worse.

While your symptoms do sound rather MS-like, you need to be aware that there are a whole bunch of conditions that have symptoms similar to MS. Some are as simple as a vitimin deficiency.

Normally when a person is showing symptoms like yours, the GP would firstly do some blood tests to make sure that there’s nothing showing in the blood that could be causing the symptoms. I expect your GP will do that next. Lots of conditions show up in blood tests… but not MS.

If nothing is showing in the blood he will refer you most probably to a neurologist. The neuro will then carry out more tests… the first one would be an MRI brain scan to see if lesions (scars) are showing on your brain which might be a sign of MS. Depending on the results of that and the progression of your symptoms, the neuro will then carry out more tests.

There is not one single test for MS but a whole bunch of tests. They put all of that information together to see if they can diagnose. This, as I’m sure you realise, takes time. VERY frustrating for you but there is no short cut.

I completely understand how scared and frustrated you must be at this point. Nobody on here can tell you if you have MS or not… you just have to bite the bullet and go through the process. Remember, it might well turn out to be something much simpler than MS and something that can be easily treated.

In the meantime, try to take it ‘one day at a time’. You will find lots of people on this board in the same boat and it helps to share your feelings and frustrations.

Your GP sounds very caring and I’m sure he will follow through and do the blood work and then a referal if nothing shows in your blood.

Hang on in there. It’s very hard but by seeing the GP you are already on the right track.

Good luck, and let us know what happens after next GP appointment.

Pat x

3

Hi Alison and welcome to the site

I just wanted to echo Pat’s excellent advice: try not to worry, it could be any number of things including some that are treatable, ask your GP to do a thorough battery of blood tests, but also ask for a referral to neurology. When a GP is stumped, it’s time to get an expert involved and, given your symptoms, that’s a neurologist.

Hang in there!

Karen x

4

Hello both and thank you for your replies.

My GP did lots of bloods back in February when I first saw him and they were all fine - he thought I may have temporal arteritis to begin with. He does seem quite caring but I’m a little frustrated that he hasn’t referred me already particularly as he admits he is stumped. His plan when I saw him last week was to take work out of the equation and see how I feel - I work as a palliative care nurse at a specialist unit and I guess he thinks I may be stressed I suppose, not sure really.

Anyway, thanks again for the replies and I certainly feel better by having access to this wonderful site.

Alison

5

Hello

Pat and Karen provide very sound advice there. I’d personally ask for that referral to a neurologist - since seeing mine I’ve felt alot ‘safer’ and confident I’m in good hands while I’m going through the tests. Just be patient as it can take time to diagnose neurological conditions - there are many similar symptoms that can be attributed to different neurological conditions. It’s hard not to panic as it’s scary when you feel like your body is malfunctioning, but one way or the other, they will get to the bottom of it.

Keep your chin up and let us know how you get on.

Stardust x

6

Hello

Pat and Karen provide very sound advice there. I’d personally ask for that referral to a neurologist - since seeing mine I’ve felt alot ‘safer’ and confident I’m in good hands while I’m going through the tests. Just be patient as it can take time to diagnose neurological conditions - there are many similar symptoms that can be attributed to different neurological conditions. It’s hard not to panic as it’s scary when you feel like your body is malfunctioning, but one way or the other, they will get to the bottom of it.

Keep your chin up and let us know how you get on.

Stardust x

7

Hello

Pat and Karen provide very sound advice there. I’d personally ask for that referral to a neurologist - since seeing mine I’ve felt alot ‘safer’ and confident I’m in good hands while I’m going through the tests. Just be patient as it can take time to diagnose neurological conditions - there are many similar symptoms that can be attributed to different neurological conditions. It’s hard not to panic as it’s scary when you feel like your body is malfunctioning, but one way or the other, they will get to the bottom of it.

Keep your chin up and let us know how you get on.

Stardust x

8

37 yr old female with 2 young kids struggling to get to bottom of ? MS symptoms. Had 5 day episode lost lot of function speech face numbness , could not process info, balance probs , vision distorted blurred, and dizzy, hearing probs episode lasted 5 days although still very off balance particularly with steps & stairs, am falling regularly, headaches nearly every day, and just left general floaty feeling in my head. Soo hard stay normal am so scared. All 3 Gps in practice suspect MS Neurologist siad hard to say what happened me possibly wierd migraine but still awaiting ct scan!! Not priority since most functions are back. Dont know what to think!! I know somethings not right

I am usually a strong person but am struggling right now, Have had epilepsy for 20 yrs and not best health but this is getting to me need answers, nottalking much to family friends because I feel like without diagnosis I shouldnt go on bout it!! Any advice welcome!!