No man’s land - interested in others experiences

[Mumofteens]

Hello All!
I have been browsing through the forums since last September when I saw a neurologist who told me, after having an MRI and EMG, and ruling out MS and Myasthenia gravis, brain tumour, that MND couldn’t be ruled out at this stage but let’s wait and see!
I have since seen another neurologist, after having a second EMG, who also wants to wait and see. I have got the idea from the forum that generally diagnosis is a lengthy process but I am finding it tricky in this no man’s land.
Don’t get me wrong there is part of me that doesn’t want to race towards an MND diagnosis but I am flailing here, and trying to manage my healthcare myself.
My speech is slurred, even more so when tired or stressed. My legs are very weak but I am still walking. What 6 months ago was a 10 min pop to the local co op now takes 35 minutes and getting up the stairs is like climbing a mountain! I can choke on water and sometimes even my own saliva but sometimes my saliva is thick and strangles my voice. I can no longer shout at the kids and I cannot help but laugh when I tell them off! Most songs on the radio make me cry but I also cannot sing a note anymore!
I have managed to see a speech therapist, refer myself for physio, get a mental health appointment and have a visit from a social worker and an OT through my doctor which I think is good considering what I’ve read about in some areas. I last saw a neurologist at the beginning of December 22 and she did say that she had booked me in for another EMG at the end of Feb, unfortunately I have just chased that and it wasn’t received so not sure when I’ll get that now.
I just wanted to ask if everyone had to go through this wait and see period while you just got worse? I feel time is of the essence but I suppose if there isn’t much they can offer then I suppose there’s no rush?

BTW excuse the photo! Not sure what I’ve done there!

[Zante]

Mumofteens hello. You have done well with your first post because its not easy.

Yes the diagnosis journey can be a very lengthy one. It does sound like you have been very proactive and got some support sorted already which is great.

Try and take some comfort that you haven't been diagnosed yet and so there is some hope. I remember my consultant saying to me that often the longer it takes to diagnose sometimes the better the outcome because its slower to progress and so not obvious.

The consultant clearly is keeping an eye on you and getting the tests done. I was same in that I felt time was of the essence to get to some kind of diagnosis.... however now looking back I wish I was still in that bubble of innocence and didn't know what was wrong. No matter how much I wanted to know what was wrong.... I wish I never heard the words. Try and make the most of each day and take one day at a time. Thinking of you. X

[TinyLady]

Welcome to the forum Mumofteens

I do think the diagnosis process can be long and drawn out and some neurologists seem to be very reluctant to confirm such a devastating diagnosis unless you tick every box, which some of us take a long time to do.

In the meantime you are doing the right thing getting support for the symptoms you are struggling with and just getting on with each day. I hope you get answers soon and escape the limbo.

[Mumofteens]

Thank you both.x
Zante You may be right about living in this bubble. Really trying to not look too far ahead but I’ve always been such a planner and I keep thinking I don’t know how I’ll be then. How do you have something to look forward to and distract you when you’re taking 1 day at a time?!
TinyLady It would be typical of me to not fit the box! Why change a habit of a lifetime!🤪 I can understand that they don’t want to deal this card unless they’re sure. Patience has never been one of my strong points though.😬

[Zante]

If you search on the forum at the top mimics of mnd there is a good post on the site with a list of conditions which can mimic mnd and the list is a lengthy one with some very rare conditions. Hence it takes the neurologists a long time to rule out everything else! I hope you manage the weeks ahead and have some progress soon.xx

[Ellie]

I have got the idea from the forum that generally diagnosis is a lengthy process !

That often depends on the symptoms: subtle or diverse symptoms can lead to inconclusive clinical exams and diagnostic tests. You report some definite symptoms which, if ALS, should raise concerns in both a clinical exam and an EMG test.

So, I have questions:
You’ve seen 2 (or 3?) Neurologists: were any neuromuscular or MND specialists?
How did you do in your clinical exams?
Have you copies of your EMG reports?
What was the outcome of your SLT appointment? (Speech Therapist)

[Arcadian]

Hello Mumofteens and sorry to read of your diagnostic journey and additional uncertainties being drawn out whilst having worrying and intrusive symptoms.
It is something I can relate to over the last 2 years and despite having a confirmed diagnosis, a pre-existing long-term autoimmune illness and some additional ambiguous symptoms, consistent with recorded / scanned spinal impingement have resulted in a 'pick & mix approach' by some of the medical professionals I've interacted with.
This impacts on overall wellbeing, decision making, and the confidence in some of the appointments and timescales I've experienced.
I do use the MNDA Connect helpline to help me focus on what to ask at clinic appointments, or non-MND stuff to push back to my GP to address.

I do feel regional resource variability between Doctors, Hospitals and regional multi-discipline team clinics should be a target area for improving awareness and best practice.
The biggest impact upon myself has been uncertainty around work, diagnostic confidence and symptoms to prioritise regarding management.

[Mumofteens]

Ellie I’ve seen 2 neurologists. The first was privately but he was really curt and I wasn’t really sure of him. I was advised to get back into the NHS system and saw a consultant neurologist at my local hospital. Not sure if either of them were specialists.

Clinical exams - I can’t go on tip toes or my heels and wouldn’t pass a walk the line drunk test! My reflexes seem ok though. My tongue waggles slowly! EMG showed slight denervation in my right leg and the second shows it in both but not enough to make a diagnosis. I was surprised as I had felt quite a difference in myself.

No copies Ellie

SLT is saying I have silent reflux but I have never had heartburn.However, my mouth has lost its tone. When I yawn or sneeze I catch both the insides of my cheeks. I used to be able to see my throat but much more closed off now. I also have become a very slow eater and struggle with anything I have to really chew.

I fully understand you guys are not neurologists though.x

[Mumofteens]

Arcadian Thank you.

[Ellie]

SLT is saying I have silent reflux but I have never had heartburn.

What about the "choking on water and saliva" - did the SLT confirm swallow problems? Have you any follow up with the service?

You don't need to feel/have heartburn to have silent reflux. xx

[SAMMY88]

Mumofteens, I was asked back in August 22 after my emg test to wait 6 months for another emg test before they would tell me anything.

My daughters and i kicked off big time . One of my daughters threatened to sit at the hospital until I received my results.

2 weeks later i received my mnd diagnosis.

It depends if you think they are hiding the results and have a good idea or they simply don't know yet.

[Mumofteens]

Ellie Yes. I’m now in the SLT system. The first time I had my 3 things that were difficult to eat she said she could see that was hard work. The second time I didn’t even get to eat my cadburys caramel she just didn’t seem interested!🤣 However, my voice has drastically changed and she has allowed me to record my voice on speak unique. Could be silent reflux as well.

SAMMY88 I’d like to understand what else it could be if not MND. Maybe the symptoms weren’t so obvious back in Dec. I walk with a stick now and my slurred speech is everyday not just when I’m tired. So yes maybe the next test will provide what they’re looking for to box tick. I’m not at camping out stage yet!

[Ellie]

Mumofteens Given all you've said, I suggest you ask for a referral to an MND specialist centre where you should get a definitive answer: are you near Cambridge or London? xx

[Mumofteens]

Ellie I do my EMG at Addenbrookes in Cambridge. Next time I see the neurologist I’ll ask if I can be referred. Thanks again.xx

[Ellie]

Mumofteens We can see you now without contorting our necks 😉😄😄