The long waiting game.

[Petey]

I've been reading the forums for awhile and thought i'd say hello. I'm 37 and I've been having issues since Jan 2020. Initially both of my feet felt numb. After a month I had my bloods checked and everything was ok. We assumed that it was a pinched nerve or something and just required rest. It never went away but I just forgot about it and got on with life as the numbness didnt really cause a problem. In April 2021, i started to get muscle twitches in my left toes which spread quickly to the rest of my body over the course of 3 days. During this time I had two separate sensations - someone plucking my right nerve down my thigh, which was very uncomfortable and a firecracker/smouldering going off in my head. Both of these only lasted a few seconds and haven't repeated. But after these episodes, I had very strong tremors in my legs that slowly reduced in intensity over the course of May but are still noticeable and have never gone away. I found out my sister has also recently had onset of muscle twitching throughout her body after some problems with her leg. I had an MRI scan which came back clear and ruled out MS, which is what i initially thought it might be (my partner is a GP which while helpful tends to play down everything as they keep reminding me that MND is uncommon ). My sister is still waiting on her MRI. We have no awareness of MND in the family, but our family history is a bit spotty.

As of yet, I havent lost any function but I have noticed some atrophy in my feet and my hands (my tendons are much more noticeable) and have had stiffness and some intermittant joint pain and i'm feeling generally weaker and less energetic. Due to waiting times, I have a private appointment with a specialist Neurologist in November, which is a bit crap but trying to not dwell on it too much.

[Mary C]

Hi Petey,
any chance of getting private neurology appointment brought forward..as November might feel to you like ages away.Could your partner use her GP status and talk to neurologists secretary to move this appointment forward.
As you no doubt know the pattern for MND is unpredictable and starts in so many different ways.
Only a Heath professional such a neurologist can make a diagnosis and usually after carrying out tests such as mri and nerve conduction tests.

I went private route and saw neurologist quickly I think a after a week from referral.I had already had MRI and nerve conduction test as organised by a Neuro surgeon ( previously thought symptoms were a back problem)

I have used private healthcare for a few reasons and never waited months for consultation.

Good luck
Mary

[Gordan1111]

Hello Petey as others I think will say, it's natural to think the worse, but there are many mimics and it could well be something else causing your symptoms. Try and put out of your head until you see the neurologist. Best wishes

[Petey]

Hi Petey,
any chance of getting private neurology appointment brought forward..as November might feel to you like ages away.Could your partner use her GP status and talk to neurologists secretary to move this appointment forward.

Good luck
Mary

Unfortunately the waiting times have gone crazy due to the covid backlog.The appointment in Nov is the earliest Neuro appointment i could find in my area. It's with an MND specialist, so that is at least something positive but waiting 2 months is going to be hard. I don't think we could do anything to speed up the process as we live actually quite far from the actual hospital we have booked the appointment with so my partner would have never interacted with the Neurologist i'm seeing.

[Mary C]

Hi Petey, yes but if your partner keeps saying she is a GP when she tries to push for earlier appointment it might have a positive impact ..worth a try?Its worth ringing neurologists private secretary to ask for earlier appointments or to suggest you could accept a cancellation at short notice.
I have made private appointments for myself and a relative and I have been lucky enough to be offered earlier appointments.Some neurologists do private work at several hospitals so might be worth asking if you can be seen earlier if prepared to go to alternative venue if that’s the case.
I guess I am a bit pushy 😂2 months is a long time to feel anxious if there is a way to get appointment brought forward.
Good luck
Mary

[Petey]

Hi Petey, yes but if your partner keeps saying she is a GP when she tries to push for earlier appointment it might have a positive impact ..worth a try?Its worth ringing neurologists private secretary to ask for earlier appointments or to suggest you could accept a cancellation at short notice.
I have made private appointments for myself and a relative and I have been lucky enough to be offered earlier appointments.Some neurologists do private work at several hospitals so might be worth asking if you can be seen earlier if prepared to go to alternative venue if that’s the case.
I guess I am a bit pushy 😂2 months is a long time to feel anxious if there is a way to get appointment brought forward.
Good luck
Mary

Thanks for the reply Mary. That is a really good idea. I'll try ringing them next week to let them know that i'll be open for a cancellation and just keep pestering them every week. Haha. I hope you have a lovely weekend.

[Banned]

It sounds like a stress thing but ask your neuro for a lumbar puncture to see if your spinal cord is falling apart. It is the very latest test to spot MND well before it manifests.

[Lynne K]

Good luck for a cancellation Petey. Lynne x

[Mary C]

Petey ..That’s the style..start 9 am Monday with making a phone call.Get name of who you are talking to.Good luck
Mary

[PeterPan]

I found that if you can develop a good relationship with a Consultant’s secretary, it can be really advantageous. Meant I could get an ‘overbooked’ appointment with my NHS consultant to discuss test results within three days (about this time last year).

[Mary C]

PeterPan Thats exactly what I meant...Let’s hope Petey gets early appointment.
Mary

[Petey]

Unfortunately, Still no luck. I tried ringing back and asking them to contact me if any cancellations but they did say it's highly unlikely due to the initially assessment appointments requiring 45minutes. I still have 5 weeks to wait now and that there will be more waiting after this appointment for an EMG/NCT. My calves are starting to feel "crampy" when i'm climbing stairs and my index fingers both are becoming stiff and painful when i try and open the fridge door or button a shirt. This was made worse when i tried to do the basic neurological tests that GPs do with my partner.I can still do it but it hurts at the base of my fingers. We're at a loss as my partner is pretty certain it cant be MND unless you have loss of function and i've read that there usually isnt associated pain with said loss of function. I've only read of one other person who had the feeling of "numbness" as an onset symptom that went onto be diagnosed with MND (although tingling seems a bit more common). I know statistically its unlikely especially at my age (my gp said i was too young to get it, which clearly isn't true), but it just feels like my body is falling apart from the inside but still OK from the outside appearances. On top of this, we are having to make tough decisions and choices based on the possibility that its MND. We moved back from abroad in the summer and are in the process of buying a bungalow (just in case).Currently living with the in-laws in a cottage where each room is on a different level, which is going to be less than ideal if my legs start giving up.

Sorry for the rant. I think it's the uncertainty and having to give up on plans and make decisions based on what may be unfolding. I know everyone here is fighting a herculean battle on the daily, which gives me a little bit of perspective.

[DeeH]

Petey

As an ex nurse I regret that I dismissed a lot of my partners early symptoms. But they were vague and put down to age and over training.
Plus other things like maybe MS. He also refused to go to the doctor for months, which didn't help.

The professionals put it down to arthritis. For a long time
Until my partners fingers were completely curling, they said it was "Vikings Disease"
And he was on a list for a hand op. This didn't happen as the look on the Rheumatologist face after the difference from March 2020 to July 2020
Had an appointmant with a neuroligist within the week, lots of cancelations at the time due to COVID.

His fingers were affected, the memorable occassion was he couldn't grip his bank card as it popped out of the machine
and it was swallowed. This was strange at the time and we were puzzled.

We are in rented property, stairs up to thebedroom and down to the bathroom. A total nightmare. He stumbled a lot.
First move stuck us sleeping in the living room as the stairs became unsafe due to balance, quickly over a few weeks but I think it was his slow reaction time if he fell.
He lost a lot of muscle around arms and shoulders give him a big bend in his neck and shoulders. This occured over time.
His yoga kept getting worse. All through 2019.
Yoga now that would be wonderful now.


Have moved twice in the last 14 months since diagnosed, in July 2021. Now in a Housing Assocciation wheelchair accessable flat (sort of)
Need the door changed so the wheelchair can get out. Wheelchair accessible just means wet room!!!!
But feel very fortunate, the waiting list for bungalows was long. Buying would be more ideal and good luck, with what you decide.

I can't advice but partner had signs we basically ignored back in 2019 and possiblely earlier.

Uncertainty is horrible and I can't imagine waiting 2 months to see a neurologist. I second the advice to keep asking for a cancelation.

Now we are in a better home, we can concentrate on quality of life. 5 months without a shower was not fun for Thomas my partner.

Sorry for the ramble but I thought reading another experience would help.

[Petey]

Thanks Dee. I'm sorry that your hubby is going through this. It sounds like your new flat is much better with a few adjustments. It must have been a really stressful year. Is your hubby still mobile? The bungalow we are buying has a wet room, which is one of the reasons we bought it but the doors are small and will need removing if I need a wheelchair in the future. I'm struggling to sleep now as when i lie down i get really strong tremor sensations through my legs. It's all very scary as I've been healthy until now and generally avoided going to the Drs. Finally getting my second COVID jab this week. I literally got the first one the day I got off the plane. So we've been back 8 weeks now. Sad summer is over.. it's getting chilly!

[Lynne K]

Dee, our Council was the same. An adapted ground floor flat turned out to be an unusable wet-room because the shower water ran into our hall. The front door opening wasn’t wide enough for my wheelchairs and the ramp which ran along the wall of our flat wasn’t wide enough to be able to turn and get indoors (even if the doorway was wide enough) More issues but most done. Just waiting on a wash and dry loo, a wider door for my bedroom and a remote front door. Council wheels turn very slowly. Lovely Lynne x