How long

[Guest]

I saw neurologist on19/9 she said she was referring me for emg. I have heard nothing since nor has my gp. I am losing functions rapidly. Have trouble dressing can't. Stand on tiptoe wallking like a cyberman guess you guys all know the drill. Trouble is that without diagnosis I can't access services..
Just wonder is this kind of wait normal am I just losing function faster than would be expected? In April I was pretty damn normal.

[MNDConnect]

Hi

I'm sorry to hear that your symptoms are increasing. Did your neurologist give any suggestion as to what they thought may be causing the symptoms? Are you able to explain a little bit more about the symptoms that you are experiencing?

It's very difficult to say whether what you are experiencing is normal as you are still undergoing diagnostic testing so it's unclear as to what is causing your symptoms.

If you are concerned that you haven't heard anything regarding the EMG, you could contact the neurologist or your GP could contact the neurologist to chase up what is happening with this.

Best Wishes
Rachel
MND Connect Adviser

[Guest]

Fasciculations just about everywhere muscle weakness in arms and legs lost ability to run and jump rt hand unable to straighten fingers clear muscle wasting to rt thumb can't speak quickly or loudly slur when tired. I have dysplasic hips and have gone from a "supermodel strut" to a cyberman stomp. My nan died of MND my mother is being investigated for FTD/MND. Neuro said very little except she would refer me for emg

[MNDConnect]

I'm so sorry to hear that you lost your nan to MND and that you mother is now under going investigations for FTD/MND.

Appointments for tests can often take several weeks to come through. I would suggest contacting your neurologist's secretary to chase up the appointment if you are concerned with how long the wait has been. They might be able to give you an idea of what the ususal wait time is. It's also worth mentioning to them that your symptoms are getting worse.

Best Wishes
Rachel
MND Connect Adviser

[Guest]

We had to buy items like Zimmer frames, a stool, and perching stool as hubby had symptoms from January but really started to need mobility aids June/July and he was only referred to Neurology in July so had to buy stuff.
It was all second hand, so when he got a diagnosis we had new equipment delivered.

[Catsparkle]

Hi Broken Nails, do you have the name of the consultant or correspondance from them? Sometimes the neurology department's list of consultants online will have their secretary's name and number on them. Or contact any number on a letter and ask if they could give you the name and number of your consultant's secretary. With direct contact you can sometimes find out the waiting times. They can also take a message from you to pass to the consultant (for example that you're concerned as you feel your symptoms are progressing etc)

You can get things quite cheaply to help with dressing (my OT gave me things to try and then took them away!). There are button threaders, clips to out on to zips so you can grip them, things to help you put shoes on, elastic shoelaces. Nelson knives are amazing, they have curved ends so you can cut your food!
Swimming seems to be useful to keep muscles going..I'm starting to get stiff legs (no fasics) and neuro physio are going to teach me some Pilates exercise. They advised me to do things i loved before and to go for it (being aware of tiredness). It might help with the stress of waiting too xx

[Guest]

Problem I really need help with is toe nails I am susceptable to ingrowing so not just anyone can cut them last time they were cut in pedicure I was in pain for months after and pod referals go to people with confirmed diagnosis only at my age.

[Guest]

I have nothing at all from the neuro clinic not even a letter to say they saw me. I will make a call to PALs problem is I do not recall the name of dr I saw and it was a reg rather than consultant so she might have moved on to a different hospital now

[Catsparkle]

You usually get a letter summarising the consultation, it can take a few weeks to come through though.
The name of the registrar doesn't matter so much, they're incredibly highly trained but still supervised by the consultant you've been referred to. If you have the letter telling you about the original referral it will tell you the consultant,otherwise your GP should be able to check on your records.
I guess you're probably best talking to your GP about your nails, or local disabilty charities/private chiropodists? Hope you work something out.
I cross fingers for a clean EMG for you, and if there's any thing you can do that you find relaxing, that can help ease things. Good luck x
Lisa

[Guest]

Been more than a month and there was no name on my letter it just named the satellite clinic I went to

[Terry]

Hi Bc,

Before diagnosis things took five to six weeks to come through, they blamed it on a lack of medical secretaries.

Since then I get things through in one or two weeks.

They definitely need a hurry up.

I had a ingrowing toe nail operation in May and it has been nothing but trouble since. I had the sides removed and the roots treated but I should have had a complete job as dragging my foot along hurts it.

Love Terry

[MNDConnect]

Hi there
I am so sorry to hear that you are having problems regarding your toe nails, which need cutting by a person with experience in this field, because you are susceptible to in growing toe nails. You say that you cannot get a referral to a podiatrist without a confirmed diagnosis, which you do not have as your diagnosis is still being processed.
It seems that the best option would be for you to ask your GP to make a referral for you to the appropriate professional, as he or she will know your history.
If this is not possible it may be that you need to contact a private podiatrist, which unfortunately would of course involve a cost to you, using the link: https://www.nhs.uk/Service-Search/Po...tionSearch/343 .
I hope that this helps and am sorry that I cannot give you a definite solution to your problem.
Please don't hesitate to contact us again.
Jane MNDconnect

[MNDConnect]

Hi there
I am sorry that it has been more than a month since you saw a neurologist, and that you only have the named satellite clinic where you were seen. If the letter has a telephone number for the satellite clinic, it may be that if you contact them they can give you the name of the neurologist who saw you, and the contact details for the relevant secretary.
Alternatively your GP should have received a letter from the neurologist, and could perhaps enquire on your behalf regarding progress on your diagnosis?
I do hope that this is helpful.
Please do contact us again for information and support. we will be pleased to hear from you.
Jane. mndconnect

[Guest]

Ok so I got letter from hospital finally. Now she has writen things I did not say in the letter what can I do about this I do not trust this woman who during consultation told me not to call fasciculations, fasiculations but "twitches" ?

[Barry52]

Hi BN,

Yet again another example of how little many health professionals understand MND. I would try to get a name and make a formal complaint. How ridiculous it is to refer to fasciculations as twitches.

Best wishes,
Barry