New here from yorkshire

[Shepster34]

Hi im Paul from Yorkshire

awaiting diagnosis

Ive done another post in the mnd connect section about my symptoms so i'll not repeat myself

Currently struggling with it all, very depressed and found out i also have a small air ways restriction in my lungs pribably pulmonary fibrosis. I need more tests to confirm diagnosis. Biopsy most likely.

The mad thing is i may have mnd and ipf, both terminal in their own way and because im not diagnosed in either, i cant get a vaccine. Ive rang the hospital and rang my gp, both said nothing they can do until confirmed diagnosis.

Im currently shielding with my wife (she has no immunity due to medication) and im working from home. Dreading Boris ending lockdown as my wife will need to go back to work in a shop and the possibility of bringing covid home. Shes gets her vaccination tomorrow.

Anyhow, if you fancy a read of what happening to me its in the other section. Its not good and my right arm is fading fast. Although my grip is strong my right arm is very weak and quite painful. The speed im losing weight is worrying. Im nearly losing a pound a day this week. I dont get it. Im eating

[matthew55]

Welcome to our band of brothers and sisters. In my previous life I was 17st. Today I weigh 10st. It is what it is. 😁x

[Shepster34]

Welcome to our band of brothers and sisters. In my previous life I was 17st. Today I weigh 10st. It is what it is. 😁x

Cheers mate. Yes im 2 stone down from my normal weight.

How do you all cope with the depression. All i can think about is losing my arms.

[matthew55]

I focus on what I can do and not about what I've lost. Oh and death doesn't bother me 😁x

[Shepster34]

Wish i could say the same. Its not so much death that bothers me its the lead up. Im scared stiff of being locked in and also being a total burden on my family.

the worst bit is i know its my arms that are weakening the most and that scares me the most. Its no good me having legs if i can move my arms.

Ive rang mnda for support and they were great but its the depression that im in. I guess at the moment i just cant accept it.

[Suefromwakey]

Paul you say your awaiting diagnosis - my husband got his this week - he'd waited about 2 years.......everybody it appears is different.

He has very little leg movement but his arms are ok and he's not suffered depression - he was always a stubborn git so perhaps that's playing for him right now.

From the diagnosis on Thursday which was in Seacroft, Leeds - various other things will now kick in for him so no doubt when you eventually get yours the same will happen.

Apart from the physical practicalities there is to be conversation around whats going to happen to him over the coming months and I as his carer will be involved in that.

Because my husband took so long over getting diagnosed and the thought that no one knew of us - not even his Dr to be honest - I took the bull by the horns and "Self Referred" him - google it - it worked a treat and absolutely no end of aids and equipment were supplied by the local council and at least we are now on various "Lists", it was the feeling of isolation that was getting to me.

I hope that you don't have to wait as long as he did for the final diagnosis

Sue

[Shepster]

Hi Sue

Has he been diagnosed with als?
its been over 2 years when I first started with weakness in my arm and legs. Things went slow, I didn’t have wastage back then. I also had an emg 2 years ago but it was normal but I think it was done wrong or too early.

My right arm is the worst limb. I get pains around my shoulder, bicep and elbow when I use my right arm. My grip is ok. No wastage in that thumb muscle. I even get pains in my wrist when I twist it. The actual wastage didn’t hurt it’s the weakness it has left afterwards.

my neuro states I have no umn signs only lmn signs so it wouldn’t be als, it would be pma if my next emg is abnormal and points to mnd.

How is your husbands weight? I’ve now lost 1.5 stones and weight is dropping off me since Christmas. I’m eating whenever I can and still losing. I’ve heard mnd does this. I’m skin and bone all over. Not just my limbs I’ve lost weight in my back shoulder chest neck and buttocks.

[GaryM]

Hi Paul. Your weight loss might be more due to worry than any potential effects of illness. My symptoms started just over 18 months ago. My left arm has had no function for over a year, right arm is about 50% gone, left leg getting weaker and thinner, but I've hardly lost any weight until the last few weeks when I've had more problems swallowing. Aim for high calorie food like fats (cheese, chips, fried food, puddings). All the things we've been told to cut down on for years.

[Suefromwakey]

No Shepster he has been diagnosed with PMA which is a rarer form of Motor Neurone Disease, from what I can gather its a slower progression but the end is the same. He has practically no weight loss although I can see his muscle loss in the legs...........he eats, speaks and drinks his beer as normal

[GaryM]

I'm confused now there's a Shepster and a Shepster34 both contributing to this thread. Are you related?

[Shepster34]

Oh wow.

So i joined here 2 years ago when i started with symptoms to browse what symptoms other people were having. I'd forgotten the username and rejoined a few days ago. So on my ipad ive must have logged in as the old one from 2 years ago. I'll log out the ipad, many appologies.

[Beemer]

Hi Paul, welcome.
I have answered your pm.

[Shepster34]

No Shepster he has been diagnosed with PMA which is a rarer form of Motor Neurone Disease, from what I can gather its a slower progression but the end is the same. He has practically no weight loss although I can see his muscle loss in the legs...........he eats, speaks and drinks his beer as normal

Mine is suspected pma as I have no umn signs, just lmn, according to my neuro. Although he did say that can change later. The biggest difference according to him is als usually have brisk reflex’s. Mine are absent in both ankles and biceps. But I wonder how many he has actually dealt with? Mnd is so rare and he’s only a normal neuro.

I know we are all different but mine is very atypical. I had mainly weakness in 2 legs and 1 arm for the first year, then I noticed more wastage everywhere last year without getting much weaker. Now these last 2 months I’ve accelerated in everything. Weight loss at nearly a pound a day on some days, much weaker in my right arm and much more wastage see; in the right arm compared to the left. Up until Christmas they were very much on a par. up until Christmas I would have said I had weakness in all limbs and wasting in 3 of my limbs and not just one, but 2021 it’s all been about this right arm.

i don’t suffer from any fasciculations whatsoever, but I have fibrillations going on all night in bed, that buzzing feeling in my arms and legs. Like an internal tremor. My wife says she can’t feel it but I can.

but the biggest difference is pain in my right arm. I only get pain when I move it, it’s not cramp. Even just twirling my wrist around causes pain in my forearm, bending my elbow without holding anything causes pain in my bicep and elbow area, lifting my arm up causes an aching in my shoulder. I can move the arm at full speed although the weakness means it feels very heavy, but it’s the pain stopping me doing most things. So much for no pain until later stages.

[Beemer]

Because my husband took so long over getting diagnosed and the thought that no one knew of us - not even his Dr to be honest - I took the bull by the horns and "Self Referred" him - google it - it worked a treat and absolutely no end of aids and equipment were supplied by the local council and at least we are now on various "Lists", it was the feeling of isolation that was getting to me.

I hope that you don't have to wait as long as he did for the final diagnosis

Sue

My wife did something similar Sue, in getting me to see a specialist, she used her Westfield Health Insurance, which allowed her to get me an initial appointment with a private doctor. The private doctor was a professor of neurology, and after his examination (the following day) he wanted to see me again. I had no health insurance (I had cancelled it the year previous) so had to go NHS, but everything took off quite quickly from then on.

[Bowler]

My wife did something similar Sue, in getting me to see a specialist, she used her Westfield Health Insurance, which allowed her to get me an initial appointment with a private doctor. The private doctor was a professor of neurology, and after his examination (the following day) he wanted to see me again. I had no health insurance (I had cancelled it the year previous) so had to go NHS, but everything took off quite quickly from then on.

Same here. We paid for private consultation and yes like you we then saw the same consultant within the nhs a few weeks later. I know it’s wrong to jump the queue but desperate times sometimes call for desperate measures 😔