Sue the Carer

[Suefromwakey]

I've tried not to come on here but now I think I need to. In November it will be 4 years since my husband started experiencing falls and not able to stop the car. Since then hes had all number of tests including MRI (2), Lumbar puncture, Nerve tests (Several), Blood Tests (Several) Leg Biopsy - it took two years to get anywhere near a consultant. Initially we were told its "MND" but as some of the tests are coming back inconclusive we are left in limbo and now finally the consultant is to send him to Sheffield for "a second opinion" when that's likely to be is anyone's guess with the current problems we all have. The letter said his latest test results "do not support a diagnosis of ALS" so I am now thinking that is one of the rarer MND conditions.

Meanwhile he can only walk about 4 steps at any one time and I am now his total carer. My home is now like a care home with ramps and equipment all over the place and he now sleeps in an "Hospital Bed" and shortly we will be having a wet room installed..........although how I am going to deal with that I really do not know.

Putting the current virus to one side has anyone experienced this amount of time before getting a diagnosis?............I think this is way too long. What can I/we expect from a visit to Sheffield research centre?

Thanks

Sue

[matthew55]

Hello Sue, sadly MND is one of the hardest to diagnose as so much much be checked. Rest assured that if it is MND then when you get the diagnosis a great weight is lifted. Stay Strong Matthew x

[Lynne K]

Sue, good luck for your husband’s up and coming appointment. I hope that he gets the eventual proper diagnosis.

it’s good that you are getting a wet-room installed.

Love Lynne x

[Ellie]

Hi Sue - sorry to hear of your husband's ongoing woes and how they are impacting so much on your lives.

As there is no definitive test yet for any MND, the diagnosis is given after other mimic/similar conditions are effectively ruled out, leaving an MND on the table by a process of elimination really - yes, even in this day & age!! - providing certain diagnostic and clinical criteria are met, of course.

Classic ALS can be quite straightforward to diagnose IF you get to see a neurologist early on. An issue arises if the ALS has a very slow progression or atypical presentation, as characteristic findings don't show up on tests, leaving to a wait and watch situation, which is very frustrating, I'm sure.

Other MNDs are more difficult - PLS, for example, can take 4-5yrs to diagnose.

Sheffield will review all your husband's tests to date and may rerun some, especially if some time has elapsed since, and will almost certainly do a thorough clinical exam, looking at his reflexes, gait, dexterity, balance etc. You may or may not get a diagnosis on the spot (I don't know which is worse!)

Best of luck to you both and look after yourself, Sue.

Love Ellie.

[denise]

My husbands diagnosis was really quick thank goodness. Well it was a strange form of relief! My heart goes out to both of you.
Denise x

[GaryM]

Welcome to the forum, Sue. I was first diagnosed with CIDP a year ago but I always suspected MND. I never had the pins-and-needles and loss of sensation that are typical of CIDP. I found the chart on this website helpful. Finally diagnosed this July.

https://www.doihavecidp.com/en/cidp-...s-misdiagnosis

[Suefromwakey]

Gary I appreciate the link..............I have seen so much on the web over this past couple of years but not that one.........he has most of the ALS symptoms but not all...............when his original consultant uttered the words prepare for a diagnosis of MND I hated the bloke......we went on holiday the very next day I spent the whole week crying, didn't even read a single word of a book...........I have asked myself a million times if the bloke did the right thing back then........ did it give us time to come to terms or has it made matters worse when he still doesn't have a definitive diagnosis.........I still don't know what to think about that.
I've seen a recent web page of the ex rugby player Rob Burrows - he's really gone downhill in such a relative short period of time whereas my husband is ok to a point, in the upper body but I do think things are happening from within - he's out of breath in 2 steps - another frustrating thing as he too was a rugby player (club level) 33 years ago he took a massive head bang whilst playing - I wondered many times if this was the trigger - oddly, I find, that no one ever bothered to ask him about any past head traumas.
Of course now we are all contending with the virus we have no idea when a trip to Sheffield is likely. I am so confused with it all - do I want to know or not FGS
thanks
Sue

[Barry52]

Hi Sue and welcome to the forum.

I can say from personal experience that when your husband gets an appointment at Sheffield Hallamshire he will be in good hands. I was initially diagnosed with MND in November 2011 at a private hospital in Lincoln. I was referred to the Hallamshire for a second opinion and following more of the same tests plus a lumbar puncture they confirmed the diagnosis but suggested it may be PLS which is a slower version of MND. I appreciate that in the current situation the appointment may be delayed but the team there are wonderful.

Best wishes to you and your husband.
Barry

[Deb]

Hi Sue,

I am really sorry for the uncertainty you are both facing. We are all different but I found hoping my symptoms were something else and then googling alternatives very stressful .

When I first saw a neurologist after a long wait I pushed for his opinion and he said he suspected MND. I didn't think a neurologist would say that unless they were sure. After a first round of the usual tests they wanted me to have access to the services of the MND team so I was told it was probable ALS MND but because some things were not typical they wanted a second opinion. After a second round of tests ( I'd had enough by then!) she said it was definitely MND and it could be the PMA type.I could have regular EMGs to monitor progression but the only way to see is time.

I think it's up to the individual but I didn't want anymore tests as it wouldn't change anything. I know I'm lucky to have slow progression up to now !

Big hugs to the pair of you. It's such alot to take on board. When I read the title of your thread I thought you were suing a carer !
Love Debbie x

[Jeanette Pearce]

I definitely feel for you and your husband

I can only speak from my own experience

If I had had a neurologist giving me an earlier indication of my condition in February 2019 I would have saved myself a lot of time and energy

As it was I feel I wasted valuable time and energy by worrying, reading and thinking about what it could be. I spent time and money seeking treatments from chiro’s, counselling and therapist’s, equipment and books. I felt I lost myself in not knowing and being in limbo

On my day of diagnosis, in June 2020 I felt shocked but immediately relieved that I could come off the unknown crazy road I was on and could join a motorway with services and help to a clear destination. I felt I must use my time wisely and crack on

I was able to focus on my situation, I still get upset but generally I can organise my priorities and goals and I feel I can relax and find positives and fun in some situations

I now take one day at a time... I no longer have the strength to walk or stand and my arms are now going the same way as my legs (heavy and weak). My breathing has started to become affected. I feel I am trying my best to make the most of a really difficult situation

I send you a big soft blanket, that has lots of strength and positivity, to wrap yourselves in

Best Wishes

Jeanette

[GaryM]

Lovely post, Jeanette Pearce. So much positivity comes across in your words.

[Yewtree]

Hi Sue.

I was initially seen at Lincoln County Hospital and, after several tests, etc the consultant said he suspected MND. That was August 2019. He suggested referring me to the Neurology Dept. at the Hallamshire. Igot an appointment early this year prior to the Covid situation and was introduced to Professor McDermott. Initial reaction to meeting him was that he lacked a bit of bedside manner. This soon disappeared as we got deeper into the interrogation of the problem. He is a terrific person, a bit blunt, but, as a retired police officer, I'm happy with that. His team at the Hallamshire is headed by Theresa Walsh (I think she is a Sister). They are all dedicated professionals and provided an excellent service. Sadly I have not been able to have any visits lately but have had continuous contact with the team at the Hallamshire and I now have various nurses, etc treating me from the Lincolnshire trust on his request. I have a video consultaion later today with the Professor which I am really looking forward to. Please have no worries about the Hallamshire, I am grateful for their service, (sadly the parking is hard to find a space. Last time we went we parked on the Park and Ride and went on the tram)

[Ellie]

Yewtree Hi there, just want to extend a warm welcome to you.

Love Ellie.

[Heather R]

I go to the Hallamshire hospital in Sheffield, and am under Professor Shaw, who has been made a dame for her work with mnd. I was told the team are world famous. Once I had my first appointment with the neurology department there, I was admitted to hospital for tests within a few hours, and came out 4 days later after loads of tests, with a diagnosis of mnd. Theresa Walsh is the specialist nurse at the mnd centre, and I find her so helpful if I need to ask anything. Hope you can get an appointment really soon x