MS or MND? Did anyone else have this fear?

New diagnosis and before diagnosis
1

Hello,

I have posted once before about my optic neuritis that started in October last year, following this diagnoses I have had lots of symptoms which include the below:

-leg and arm weakness (arm weakness is getting worse but leg weakness comes and goes)

-stiffness in joints especially legs and hips and back

-muscle twitches through body

-back pain and knee pain (have had for a few years and I am slightly overweight so wonder if it could be down to this)

-numb hands and tingles at night

-pins and needles in feet and sometimes in leg

-pain in face and jaw, hurts to touch and is on one side

-skin sometimes feels sensitive to touch

-jaw and tongue hurt when eating or talking a lot?!

  • sometimes get shooting pains in my left arm or toe

  • my ears are sometimes sensitive to noises

-episodes of the pitch in my voice changing - this seemed to happen when I was on steroids for the ON

-ive had a few episodes of vertigo on waking up

This has been on and off since October but the weak limbs and muscle twitches have lasted the longest and my jaw pain is fairly new.

It would be fair to say I suffer very badly with anxiety, particularly related to my health. I am sooooo scared it is MND which I think is worse then MS. My GP said unlikely as MND does not affect the eyes.

I had an MRI of my brain in November which came back clear and no demyelation on my optic nerve and no leisons. I am due to see a neurologist on the 4th March.

So afraid :frowning: has anyone else had an experience similar to this?

thanks so much in advance.

Philippa xx

2

Hi pippa86. I wouldn’t worry. It sounds to me like you might have fibromyalgia. The symptoms of ms and fibromyalgia are very similar.

3

Hi Deb, thanks so much for replying. I did consider fibromyalgia as I’m in a lot of pain a lot of the time. I’m just so afraid about the twitches and weakness which is leading me To think motor neurone disease, but I think twitches and weakness are present in ms too? Have you ever had experience of an achy jaw and tongue when you chew/talk? Thank you so much for replying x

4

Hi pippa. I do have twitches and full body jerks. also lots of aches pains including jaw aching which was neuralgia. I have got fibromyalgia and ms though!

5

I’m not diagnosed with MS but am having some of the odd sensations that you have.

For some reason I have tried to post but keep getting an error message otherwise we could compare notes!

6

Hi Pippa

it is worth noting that MND is far rarer than MS. Don’t hold me to it but I believe I also ruled it out because the senses like eye sight are not typically impacted.

I can see you and Deb both have jaw issues. I have been getting a lot of pressure in my Jaw the last few days which is worrying me.

Deb - with your TN how did it present itself? Was it immediate electric shock pains or did you go through an initial period of mild ache/stiffness

kind regards

Jonathan

7

Hi jonny. My neuralgia started off with a mild ache in my jaw a bit like you get when you have been laughing a lot.

8

Unfortunately I can’t remember what that feels like :slight_smile:

9

Hi jonny. It soon get worse and I would feel like someone was trying to pull my teeth out. I started to get really bad headaches but only on the left side of my head which would send pain down face and into my neck and shoulder. I only get dull aches these days thank goodness down both sides of my face.

10

Hi Not Chilled - I have messaged you!

11

Thanks so much for replying Deb and Jonny,

My jaw pain started as if I had a pain in my wisdom tooth, then it spread to my ear and hurt when swallowing too. The right side of my face was so sensitive to touch too. I also have an ache in my jaw and tongue when I chew and talk a lot - do you have this sensation?

I’m hugely struggling with weak arms at the moment i cant even wash my hair or brush my teeth without feeling like ive just lifted 10 stone!

Does this impact you? I wonder if this is an MS symptom?

12

Hi Pippa I do struggle with weakness in my arms but it isn’t too bad now. It feels like someone has tied weights to my wrists. I have problems with thing like getting dressed and brushing my hair. I haven’t really had to much of a problem with it for a while. I think it is probably a fibromyalgia thing rather than ms but don’t quote me on it. Like I said I have both.

13

Hi Pippa

Your jaw description is not identical to mine but is similar. I suspect I have TMJ so am going to see the dentist to discuss fitting a mouth guard.

kind regards

Jonathan

14

OK its honesty day today for me.

Pippa86 are you married or have children or are you on your on? Reading your first post I thought jeez thats a lot of things going on. I wouldnt have the energy to sit and write them all down or even bother with some of them personally.

You have jumped a mile from MS to MND. two totally different diseases.

Twitches can be a sign of low magnesium.

MND is rarer then a chocolate teapot.

MND symptoms

  • a weakened grip, which can cause difficulty picking up or holding objects
  • weakness at the shoulder that makes lifting the arm difficult
  • a “foot drop” caused by weak ankle muscles
  • dragging of the leg
  • slurred speech (dysarthria)

The condition isn’t usually painful.

Looking at your list i would say no to MND but i am not a doctor. No where does it state twitching. One of my first symptoms with MS way before i knew i had it was dropping things all the time, i would just drop my keys, most things. But i never thought of MND i didnt even think of MS, i just swore everytime i dropped them lol.

Have you been diagnosed with MS? WHERE are you with neurologist.

I am so sorry you are so anxious about your health its no fun, and its hard when you feel rubbish all the time time. BUT you need to think what is going on around you? sometimes it can be our life style that is causing all these things. even down to hormones. the brain is a werid thing the more you worry the more it gives you something to worry about. Have you spoken to your doctor about your concerns? Have you a partner or friend you can get support from or a family member or mum etc?

I would look at your health overall, your weight, life style etc, as a lot of things can be simply down to lack of vitamins and hormone changes in women anyway.

Maybe go see and talk to someone about your concerns. It is scary when you have things you cant explain, and sometimes we just need to distract ourselves. xxxxxxxx big hugs. xxxxxx I am not really a meany honestly lol. Just sometimes one has to be honest but supportive. xxxx

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15

Hi Deb,

Thanks for your reply , yeah I struggle with washing my hair and lifting my niece - ache ache ache!!!

take care x

16

Hi Crazy Chick,

Thanks for taking time to reply - it’s much appreciated. I have sent you a private message - hope that’s ok. xx

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Yes hun, hope we can keep chatting. good luck on the 4th. xxx

18

Hi Pippa Thought I would message you to ask how you are doing. I could have written your original post!! Message me if you want to connect.