Am I in denial?

[Ians]

Hi folks. So, I’ve been given a preliminary diagnosis which I’m struggling to believe although perhaps I’m in denial. I’ll list out my timeline below (warning, it’s long). Let me know what your thoughts are please if you can be bothered reading through it.

So I saw my GP in June last year as I had trouble moving my right thumb and index finger for a few weeks. I was building a garden shed at the time and thought maybe it was a result of using a hammer and impact driver. They thought maybe it was carpel tunnel but the surgeries physio ruled that out. I got referred to the hospital osteo-physiotherapist and finally got a telephone appointment in August this year (14 months later!). We spoke and he agreed to see me the next day at the hospital.

By now, I had what they call the “split hand sign” - limited movement, strength and coordination with my thumb and index finger. Along with sunken muscle wasting on top and bottom of my hand between thumb and finger. The physio wasn’t sure but he did a chest X-ray on the day and sent me for a neck MRI and also referred me to a neurophysiologist which I saw in September. The neurophysiologist did a nerve conduction test and EMG. He didn’t say much other than it seemed to be a local issue at my hand and said he was concerned and referred me to a Neurologist which I saw last week.

The neurologist examined both the neck scan images and the neurophysiologists results and did about an hour of his own tests on me using random things like pins, vibrating piano tuner type things and a reflex hammer. He said I had “brisk reflexes”.

To cut a long story short, ultimately he said, and I quote “I’m not going to lie to you, it’s likely to be MND” - but they still needed to rule out some things so they did some bloods tests on the day (like for lead poisoning) and he requested a head MRI on the appointment system which I suspect will be in many many months. Also said he’d ask the radiologist to double check if there was nerve compression on my shoulder somewhere.

Then the neurologist arranged to see me in 6-9 months to see if there has been any progression and to discuss the results of blood tests and scan.

I’m feeling a bit stunned to be honest. I don’t feel too bad at all physically apart from having a gammy hand, fatigue, bit of stiffness, brisk reflexes, occasional cramps and spasms. I also have permanent fasciculation’s in both calves but have had that a few years due to long standing lower back slipped disc / sciatica I think.

Yet…. he said a couple of times it’s most likely MND but that it would be a slow progressing type. The consultation got a bit blurry after the first time he said it as I was pretty stunned. I’ve not told anyone apart from my wife as I’d feel a bit stupid if it turns out to be nothing so don’t want to cause anyone any stress. I just can’t fathom why he’d be quite sure based presumably on my hand and the neurophysiological tests.

Also, just to say - if you’re wondering if it was inappropriate of him to vocalise his (presumably preliminary) diagnosis, then please understand that I did press him on what he thought it was.

If you’re read this far then thank you! Hope I haven’t bored you lol. My question is should I take this seriously? Am I in denial? Should I just try and forget about it until there’s a formal diagnosis? I’m feeling a bit stunned tbh. Like I’ve been given a possible death sentence in such a casual manner, but I’ve to twiddle my thumbs for 6-9 months to find out for sure. Suppose I should be thankful that if it is what he suggested then it’s maybe a slow progressing type. It’s just difficult not to spend every waking moment thinking about the future or researching the condition.

Anyway, I’m waffling now so I’ll end it here (the forum post I mean, not my life haha).

Cheers,
Ian
(Male, late 40s, Glasgow area)

[Carl]

HI Ian, I'm newly diagnosed with ALS and spent 9 months waiting for a diagnosis, it's scary times but it's not over till the fat lady sings. Saying to you don't worry isn't helpful as i know you're thinking of nothing else day and night, but until you get that diagnosis try to stay strong as there's still hope.

[Arcadian]

Hello Ians, sorry to read this - that's similar to my own journey and symptoms / diagnosis beginning.
Denial and wondering about anything else during the diagnostic process is a natural and reasonable response, particularly as diagnosis is by excluding other conditions and physical tests to confirm responses consistent with MND. Unfortunately it takes time regarding appointments.

For me, the timescale during diagnosis and uncertainty didn't help. An 'interim diagnosis' after months of symptoms build up is still a bit of a medical 'no-mans-land'.
It impacts on how you feel, what you plan, as well as wider personal and financial implications and impact.

In the absence of much local medical support via GP and local hospital during the interim stage, I booked myself regular physiotherapy appointments - both consultation and limb / joint extension exercises and massage therapy.

Eventual referral to a regional Neurology hospital with a multi-discipline team for MND, massively helped on the psychological front and the confidence around symptoms issues being appropriately and timely observed and interpreted.

Deep down I feel behavioral and attitude changes impact, a sense of change around what actually matters any more.

I volunteer into research projects around quality of life aspects and early symptoms diagnostic aspects.
I feel the time taken from first symptoms to diagnosis, particularly with an illness like MND, poses various ethical and psychological challenges, where best outcomes and better understanding are important for both the patient and medical professionals.

[JamesW]

Hello Ian, sorry you find yourself here but nevertheless welcome to the forum ☺️

Your initial symptoms sound identical to my own, the only difference being that my onset has been symmetrical. My progression has also been slow.

It doesn’t sound to me as if you are in denial, when I was going through the diagnosis process I spent a lot of time looking at other things that my symptoms could be and hoping that it would be something else or that they have made a mistake of some sort.

I had my symptoms for two years before my diagnosis, and even after that I continued to work for another two years. So yes, it may be that your symptoms seem rather mild at the moment and my advice would be to take full advantage of what you have.

take care and I hope to see you around in the threads,

James

[Ellie]

Ians A warm welcome to the forum, Ian.

I don't necessarily think you're "in denial", rather that you're mightily confused/bewildered, and unable to make sense of a wishy-washy 'diagnosis'.

If I may ask some questions 🙄

Why a chest X-ray?

How many muscles or parts of your arms and hands were tested on the EMG test? That the Neurophysiologist thought your issue is a localised hand problem is at odds with what the Neurologist thinks, hence the question.

Are you attending the MND Clinic at the QEUH in Glasgow?

Were you given a copy of the EMG test results?

Love Ellie xx

[AngieCanuck]

Ians hello 👋 My mom is from Glasgow, she came to Canada in her teens.
I have slow progressing ALS (upper motor neuron dominant) and I understand how you’re feeling. It sometimes feels like the doctors are just messing around in the dark. It can be bewildering at best.
It’s okay to feel however you are feeling.
A few things I’ve learned so far:
1. don’t consult Dr. Google, he/she can be very misleading and unnecessarily upsetting.
2. do what you can, and enjoy what you can.
3. when in doubt, turn to your friends here on the forum. Questions will be answered, support given and laughter shared.
Hang in there,
Angie

[Deb]

Hi Ians and a warm welcome to the forum although I'm obviously sorry you find yourself on here.

I don't think you're in denial as it's very hard to accept without a firm diagnosis. I was told after a clinical examination on my first visit to a neurologist that MND was suspected. Like you, this wasn't their fault as I had pushed them to tell me.

For me this was the worst part and my head was all over the place whilst waiting for tests. Once the diagnosis was confirmed I began to come to terms with it and felt I could tell friends and family. Also I had support from a team of professionals.

I hope It turns out to be something else in your case but if you can try to make the most of every day.(everybody should do this in life !)

Take care and keep in touch,
Love Debbie x

[Ians]

Thanks so much to everyone that has commented. I really appreciate all the kind words and advice. What a great forum this is!

Some answer to Ellie below:

Ians A warm welcome to the forum, Ian.

Why a chest X-ray?

The physio arranged this on the telephone appointment before he’d even seen me. Just said to come in 10 minutes early and get it done. Don’t really know why but he called me a few days later to see it was all clear.

How many muscles or parts of your arms and hands were tested on the EMG test? That the Neurophysiologist thought your issue is a localised hand problem is at odds with what the Neurologist thinks, hence the question.

I believe he did both arms and both legs. He spent most of the time on my right arm if I remember rightly.
He definitely said it seemed localised at my hand. I’m not really sure what that means. What is it you mean?

Are you attending the MND Clinic at the QEUH in Glasgow?

Yes. Got the electrical test and neuro appointment there.

Were you given a copy of the EMG test results?

Ive asked my GP to print it out so I’ll get it tomorrow.

Love Ellie xx

[Ellie]

He definitely said it seemed localised at my hand. I’m not really sure what that means. What is it you mean?

In ALS, more widespread abnormalities would usually be seen but that would explain the "it's likely to be MND", rather than it is ALS/MND. A "localised" hand issue could be something simple but, given that you're attending an MND specialist Neurologist, they know enough to differentiate.

In the cruel world of ALS, words such as localised and slow progression (kind of) help to lessen the blow.

6-9 months until your next appointment must almost feel like an anticlimax after your last appointment and contribute to your "Am I in denial?" question. If you experience further symtoms or changes in the interim, don't hesitate to contact the Clinic and ask for an appointment.

You should learn more from the EMG report when you get it. xx

[Arcadian]

If you experience further symtoms or changes in the interim, don't hesitate to contact the Clinic and ask for an appointment...

And this is the absolute difference between a hospital with MND Clinic and contact number, versus a GP and local hospital 'having a go' when eventually pushed.

My critical observation of the diagnostic process, is medical professionals being unaware of additional external referrals and combined resources.
I would say it's an important issue in bridging denial and acceptance with understanding.

[Zante]

Ians Hi Ian. I wanted to echo other members and welcome you to the forum. You have already mastered posting and quoting which seemed to take me forever!

I am sorry you find yourself here. I can totally relate to how you are thinking and feeling. I was diagnosed in June and couldn't really believe it. I also had a second opinion which my mnd nurse arranged which was in August where the diagnosis was confirmed. I took months of researching symptoms and looking for answers for something else it could be.

But I learned that every case is different. Every person can present with a starting problem or notice something not working how it should do. There doesn't seem to be a pattern which is why it's also so difficult to diagnose.

I am still walking everyday and having trips out. I am not in denial but can't get my head around the diagnosis either.

We are here for any support and answers to questions you might have and friendship. No one here is alone. Xx

[SAMMY88]

Hi Ian, It's so hard getting your head around hearing the words MND coming out of the neurologist mouth.

If you are anything like me, you will be studying your emg results when you receive them. We all become little experts in the field of MND/ALS.

6 to 9 months till next appointment sucks , but being seen in an actual MND clinic , where i hear they really look after you is good news.

All the best Sam

[Ians]

Thanks again to everyone that’s commented. It’s really appreciated.

Well, I’m still no further forward with understanding what’s going on although I have received my EMG report. The wording didn’t mean much to me although it does mention MND being a obvious concern.

I’ve been trying to arrange for the neurologist to give me a brief call back to discuss the diagnostic procedure going forward but I’ve not had the call yet.

Anyway, I wanted to ask you all - I received an appointment letter today for the hospital in a couple of weeks to get “Immunoglobulin therapy” in the neurology department. It’s a 4 day stay in the hospital. It doesn’t say why I’ve to do this so I’m very confused. I’m not finding anything particularly relevant when I google.
Anyone know what this is about?

Cheers,
Ian

[Ellie]

Ians Okay, so ALS/MND is a possibility but not a slam dunk.

The IV immunoglobulin treatment is to see if your symptoms improve with it and thus rule out the ‘mimic condition’ of multifocal motor neuropathy (MMN) and, to a lesser extent, chronic inflammatory demyelinating polyneuropathy (CIDP) and myasthenia gravis (MG).

[Ians]

Thanks Ellie, can always count on your great knowledge!!

I already have an autoimmune disease (coeliac disease) so it wouldn’t surprise me if I had other immune system issues. Time will tell…
Still got the head scan at some point too.