Worried about possible symptoms.

[RMG40]

Hello. Its taken a lot of courage to write on here today. I will try and keep it short:
I'm a 40 year old female. Last November I started to have twitching in my left arm that would come and go. I tried not to take notice of it and after a few weeks I thought it had gone. But just before Christmas I noticed I was having more twitching and this time in my left calf muscle. I noticed it more at rest. After a short while, the twitching started to appear in my other calf muscle, in my feet, my lips, arms, chest. Now I get daily twitching.
I've also noticed that my right thumb and left pinky often get a bit stiff and don't move as they should when doing everyday things . My GP has referred me to a neurologist over a month ago, but it will take a few months or more with the current situation. I'm very worried as she suggested it could be MND or MS.
My arms and legs also ache more than usual. (I've always suffered with back pain and achy muscles)
Any reply would be very much appreciated. Many thanks.

[MNDConnect]

Dear RMG40

I can only imagine how difficult it was for you to write to us today, you must be very scared with everything that is going on with you and because of the comments made by your GP.
You are describing your main symptoms as the twitchings in muscles across your body, which started in your calf muscles.
On their own these twitchings are normally considered benign and would only be looked at in more detail if they were accompanied by weakness.
Usually if the twitchings were because of MND, it would indicate that the motor nerves were being affected, this in turn would mean that the muscles affected by the twitching would start to become much weaker. Although you say your legs ache, you don’t mention they feel weaker.
You also say that you are experiencing stiffness in your thumb and small finger, does this mean you are unable to use these digits, do you feel there is a weakness there?
It is a little early for your GP to have named conditions such as MND or MS, as there may be other reasons why these symptoms are happening to you.
Because your GP mentioned these particular conditions to you of course they are going to resonate in your mind and it won’t be until you can have a consultation with a neurologist that the thought of these conditions will not be on your mind all the time.
Have you contacted the neurology department to see if you can ask to be considered for a cancellation appointment? This can sometimes mean you will be seen much more quickly than waiting for your appointment.
The other option is, if you are in a position to afford it, is to ask your GP to refer you for a private consultation with a Neurologist. This can cost in the region of £250, but it might help to put your mind at rest. You can always opt back into the NHS at any time.
Would it help if you spoke to one of us on the helpline? You can call us on 0808 802 6262 which is a freephone number. You can also email us direct at: [email protected] or continue to post through the forum if that suits you best.
Please do contact us with any questions or concerns you may have.
With kind regards
Jacqui Anderson
Senior MND Connect Adviser

[RMG40]

Thank you so much for taking the time to reply to my post Jacqui. You're right, I will have to contact my GP again and ask her for a referral to a private consultation. I believe this is the only way I can get the answers and hopefully put my mind to rest. I don't feel weakness in my hand, it's more of a stiffness which feels strange. It comes and go's.
Thank you again.
Thank you again.

[House44]

Once my gp referred me to a neurologist I got a letter to book a appointment which there was none. So I called the neurologist office and said I’d be willing to see someone on a cancellation. 1 week later I had a appointment with neurologist. Try that RMG40 xx

[RMG40]

Thank you for your kind reply House44. I will try that on Monday.

[Hullcitymad123]

I am a 55 year old male who has had calf twitches for over 2 years , usually after exercise .after 10-15 mins these subside and more or less stop . I do get individual twitches in my thighs elbows arms neck etc but very erratic and sort of individual as it were , but probably 3-4 per day . I wouldn’t say I feel particularly weak in any part of my body . I have also experienced odd sensations on my face similar to say feeling like I’m wearing glasses , slight pressure on parts of my face , around my eyes and cheeks . I have difficulty sleeping and have bouts of depression . My GP always just says I have anxiety and sends me off for anti depressants ( mirtazapene 30 mg) . These twitches should be accompanied by muscle weakness?? My wife feels I’m mad even contemplating MND . My back also throbs between my shoulder blades .. what kind of pain is associated with MND ? . Sorry if this sounds like some mad mans ramble ... Steve

[matthew55]

Anyone should be grateful they don't have this God awful deseise

[Suefromwakey]

Hi Steve, not a mad ramble.......just concern ............Only thing I can tell you is that MND does not always come with pain.......my husband has had it for 2 years and never once suffered any pain, then reading some of the posts on here people do have bad pain,

This thing is different in every way for everybody........sorry that's not really what you wanted to hear, best wishes

Sue

[Hullcitymad123]

I’ve had odd symptoms over 7 years , but thus far no muscle weakness , facial sensations came went for 2 years the went again for 4 years .... no balance issues as yet .. thinking MS at one point then all went back to normal ... calf’s have always twitched as have my eyelids on and off 10 years ... back ache plagued me for years but I used to run pubs and humped 22 gallon kegs in my youth .. I’ve no idea really .. it’s just all really odd

[Graham]

While your card has been marked that you are mortal, I can assure you that you don't have MND. MND is far more aggressive Hullcitymad123.

[Hullcitymad123]

Sort of sure your right and I appreciate your post , thank you . I consult Dr Google far too much ...