I’m so terrified

[Helen212]

Yes, that’s a good idea.

I don’t remember actually having any as I lay there and he inserted needles. Would it matter if they didn’t occur during the EMG exam do you know?

I’m so sorry to bombard you with questions.

[Ellie]

Don't worry yourself Helen.

EMG testing for ALS looks for fibrillations, motor unit activity etc. etc. so that none were found on your test is good news. It matters not a jot whether you twitched or not.

A diagnosis of ALS is made on the basis of clinical exams, an EMG and mimics having been excluded.

[Helen212]

Sorry to post again.

so worried.

cramp in leg and stiffness just won’t go. Stiff fingers around joints. I’m clumsy I’m dropping things my speech sounding my s’s has been noticed when I have asked friend for opinions.

I went to see a specialist and I think my reflexes were a bit off, but he said it can be normal when stressed. He’s going to do another EMG and has now ordered the related blood test which has worried me more. He said my old Achilles injury would probably account for something which he noticed in testing reflexes.

the twitches are so tiny and quick I don’t get time to video them like he asked. Some I see but don’t feel which worries me even more. They are like tiny ripples as soon as I stretch in the morning they begin. Many concentrated around calfs now but still get them all over.

I’m having involuntary swallowing still on waking too.

The specialist I saw last week said it was probably BFS and the symptoms would go but they just seem to get worse.

Trying to keep it together, so worried if blood test comes back high I’ll feel as if I know.

delaying going for it.

Sending thanks and kind wishes to you all.

[PeterPan]

Helen212 MND isn’t revealed through blood tests as far as I’m aware. Why are you delaying it? What do you mean by “if the blood test comes back high”? What is the test for? I didn’t have any blood tests before my diagnosis.

If a specialist said you probably have BFS why not accept his/her opinion? I know this is easy to say, but do try to stop worrying because it really doesn’t help.

[Helen212]

Thanks Peter

its the kinase something or other I think and I’m worried if it comes back high as it can be an indication I think.

I’m worried as my twitches are so slight just like little ripples. They don’t stop and have been around constantly appearing for weeks. I’ve never had cramps or stiffness before.

I just felt on my 2nd visit to specialist when he tested my reflexes etc he seemed more concerned.

I am really trying to keep my worrying under control as I’m a newly single mum and I have to be strong for my daughter.

I’ve confided my worries in a couple of friends now as I have no family support.

I’m very grateful for your reply and am really trying to stay positive.

Thank you

[Mary C]

Hi Helen,
Good luck on Tuesday.I think it was Leamington Spa I first went to see neurologist as I too live in Warwickshire.I have found the Warwickshire services for palliative care excellent.
Hard not to let your mind run wild .
To get my GP referral..I just rang GP surgery and said I had an appointment with neurologist ( Dr Anthony Thomas)and letter done for next day.
Please let us know how you get on ..Tuesday.
Best wishes
Mary

[Helen212]

Hi Mary,

Thank you for reply, that’s the Dr I’ve seen twice now. I am awaiting an EMG and a blood test.

I’m just so worried and appreciate your time to respond to me.

I am not in Warwickshire I’m in Staffs but I travelled to see him.

Again thank you

[MNDConnect]

Hi Helen

We've discussed your symptoms quite a few times on the phone and nothing that you say would suggest that you have MND. You mention that you've seen a specialist who thinks it is BFS. You need to try to listen to what the specialist says and take this on board. They think it is BFS not MND. They are the specialist and it is their opinion that you need to listen to.

I know that this is easier said than done but you really need to try to forget about MND and listen to the specialist.

Best Wishes

Rachel
MND Connect Adviser

[matthew55]

Or seek professional mental health help

[Helen212]

Very worried after I can flick my skin and the tiny movements will appear. These aren’t even twitches my friend videod them on request of Neuro

[Helen212]

Fingers are so stiff. Mild Cramp in arch of foot constant. Friends notice my speech different and my foot looks thinner.

[MNDConnect]

Hi Helen

As we discussed on the phone this morning, you need to speak to your neurologist about your concerns.

Best Wishes

Rachel
MND Connect Adviser

[Helen212]

Yes, my mental health is getting a battering with this. So you a probably right.

[Helen212]

Thank you

He’s on leave now for 2 weeks.

Trying to be strong for my daughter.

[Helen212]

Hope it’s ok to post again here.

Saw new GP today after examination she is contacting NHS hospital to see if I she can get appointment bought forward with NHS Neurologist and she’s ordered an MRI of spine. She witnessed the fasics and looked at my tongue etc. She was so kind and honest but I’m beyond terrified.