Hello and thank you

[Ribo]

I've joined recently and have been reading all the information and receiving support and encouragement from the forums- I've not wanted to disturb anyone on here with my story but I have another neurology appointment coming up and I'm really anxious now.

I have a history of cancer and when I first became ill, I spent a year being sent from specialist to specialist as they all wanted to rule out a recurrence or a new cancer.

Due to some brisk reflexes and unsteadiness, I was referred to a neurologist who is a Parkinson's specialist in August last year - we have a very strong family history of Parkinson plus syndromes.

He had concerns when he saw me but he didn't think it was Parkinson's. He had ordered a few tests including a DAT scan and tests for stiff persons syndrome and then wanted me to see his colleague. I have received the appointment and have realised that he is an ALS specialist. The tests have came back negative, so no Parkinson's thankfully.

For context, 3 years ago, I used to work full-time, volunteer for various committees, run 3-5 times a week between 5-8 km a time etc. I have a very active family - and have always been active my whole life.

Since, I have had various strange infections, have lost over 15kg, have been ill health retired and over the last few months need a stool to shower amongst many other weird and unexplainable symptoms.

I'm hoping this is some form of COVID related illness (I used to work in healthcare so have been frontline and worked throughout the pandemic) but they haven't accepted me due to the neurological signs ...I just need some help, I'm really struggling and it's taking a huge toll on my family.

I'm not sure what I'm asking for really ...

 

[Nikki J]

I am sorry it all sounds very difficult. I am unclear what you meant about acceptance and neurological symptoms. It is certainly true that long covid and other post viral syndromes can cause neurological symptoms. We see it here a lot and it being reported more and more.

Dealing with any chronic illness is very hard as you know. As you wait for your appointment there is no shame in seeking counseling for stress management

 

[Ribo]

Where I am in the UK, the long COVID service won't accept me onto their waiting list until the neurologist confirms that this isn't a progressive neurological condition, which they haven't done as yet - hopefully they will after this appointment.
(I've refrained from using Dr Google to check my symptoms as I believe that a little knowledge is a dangerous thing, this is just my opinion)
I joined this group when I received the appointment letter earlier this month and realised who I would be seeing...I thought I would be okay given my medical history, but it's been harder than I anticipated.
I have had help through my primary care practitioner via a health coach and also had a referral for counselling - they both said that I'm doing everything I can, yes waiting is hard and hope you get answers soon ...I'm sorry for moaning especially on this forum. Even through my cancer journey, I hadn't lost this much of myself and my life.
Thank you for responding

 

[Ribo]

I've been to the initial appointment now and asked about the long COVID referral...he said that I have brisk reflexes and clonus as well as hyperinternsity of my corticospinal tract on my MRI which he can't ignore - I'm not sure what this means?
He has ordered quite a few more tests, EMG and a pet scan

 

[Nikki J]

I don’t think the PET scan would be for mnd. They have done some research on mri/pet scans in mnd but I don’t think anywhere is using it for diagnosis yet. So there must be other things in their differential.

Question were thereflexes and clonus bilateral? How many beats of clonus?

 

[rmt]

The doctor should tell you what the tests are looking for. Can you contact the doctor online or on the phone to get more information? Better to ask the doctor directly than to speculate about what the doctor is thinking.

 

[Ribo]

I honestly have no idea. The exam was intense, I was so exhausted. He said other things but I could only recall bits and pieces. My other half said that the doctor thought this was neurodegenerative. I will ask more when I have his letter, thank you

 

[Ribo]

I read in another post on here that someone was diagnosed based on the CST hyper intensity on MRI and tongue fasciculations with no EMG - is it true that this is enough for a diagnosis -
This concerns me very much as this is exactly what the neurologist told me that he was worried about

I didn't think that this was possible without limb involvement so I was thinking this had to be something weird but something else
I was thinking that the breathing difficulties and needing to sit up in bed was something viral, I had throat surgery with my cancer so I thought that potentially the voice changes had something to do with scars or something. I couldn't explain why I was struggling on the toilet - I can't get enough air to finish sometimes and I find it hard to breathe if I have had a meal and try to lie down, funny things like this and struggling to clear my throat or cough since winter has come in but then again my immunity has been awful, chewing has been an issue and I have had to change my diet since the tongue spasms - but in general apart from cramping, my hands and feet work, do I need to stop pushing that this is viral?
I don't know what to do

 

[Nikki J]

That person was supposed to be followed up by an ALS specialist to confirm the diagnosis. They never returned so we don’t know what happened. The diagnosis was not made in accordance with the diagnostic guidelines for ALS. There are rogue physicians and we have seen diagnoses overturned more than a few times here. We had one person who was disgnosed by a neurologist due to tongue fasciculations alone. That was swifly overturned by the neuromuscular and diagnosing physician was reprimanded

Can you have ALS without limb involvement? Yes. But it can still be diagnosed by clinical exam and emg.

You need to keep following up with the doctor who has been seeing you. When is the emg? The PET?

 

[Ribo]

The EMG is in March, I had the PET 2 days ago so will hopefully get results soon. The other blood tests have come back normal, including the paraneoplastic screen and no evidence of current EBV or anything he said. He also ordered some lung function tests and some other breathing tests but I'm not sure when it will be yet.
In May, it will be 2 years since I haven't been able to work and I just feel like a drain on everyone around me - I'm usually looking after everyone not the other way around...I can do less and less and yet I feel more and more tired, I don't know how that's even possible - sorry, I'm feeling a bit sorry for myself today but tomorrow is another day
Thank you for responding

 

[Nikki J]

It sounds like the doctor is being very thorough so you should have some direction soon. I know how frustrating it is to have to wait. Take care and do let us know

 

[Ribo]

Hi Nikki
The nerve study says no evidence of sensorimotor neuropathy, no significant myopathy or myositis and no myasthenia gravis
The lung test said normal spirometry with reduced MIP, MEP and SNIP pressure, with significant decrease between sitting and supine capacity and normal blood gas. Normal spirometry sounds good?
It doesn't sound like we getting to the bottom of what is going wrong with me and that's frustrating ... should I be worried?

 

[Nikki J]

Did you only have a nerve conduction study? That would be shocks. The emg has the needles. If you had the needle part what was the interpretation?

Normal spirometry would be good. But it said reduced mip etc which aren’t normal and the drop when supine is concerning? Do you know numbers? Was bipap mentioned?

 

[Ribo]

I don't know what normal is anymore Nikki - to my mind its not normal that someone that has always tried to eat healthy, exercise, follow the 'right' advice and apart from having cancer is supposedly 'healthy' with every test 'normal' but can't do almost anything anymore

Im sorry ...
I have to see his respiratory colleague for something - I just heard him say the word MND for the first time

 

[Nikki J]

Seeing a pulmonologist is good. They will be able to explain the spirometry and prescribe bipap if needed. If mnd is in your differential don’t accept cpap

Did you have the emg( needles) is that why they said mnd or is it solely on your spirometry?