This can't be happening to me

[AnnJac]

Hello. My name is Anne. I am a 63 year old retired (due to illness) construction professional. In July 2018 i was diagnosed with Breast Cancer. Chemotherapy, then surgery and then radiotherapy. Surgery was January 2019. I was recovering well from surgery (10 hour op). But at the 3nd of February I started to experience problems of heavy legs and fatigue. Went to doctor - blood tests showed I had very low Vitamin D so we all thought that was it. By middle of April I had developed left side foot drop. Back to GP. Suspected cancer secondaries brain or spine (I new it wasn't this as I had no pain anywhere but it had to be ruled out). So MRI scans. Nothing found. Leg weakness continued and right leg started to show signs of following suit. By this time I could only walk short distances and those with a rollator. GP referred me for an urgent Neurology appointment (this was end of May) - appointment came through for end of October. Had a routine follow up appointment from radiotherapy at beginning of August and consultant so worril,ed he had me admitted to hospital. Various test including lumbar puncture and nerve conductivity tests. Registrar came to see me and said I had axonal polyneuropathy, nerves were dead, it was progressive. Nothing they could do and they were discharging me! This hospital was not my local one. Came home end of August. September 3rd i fell due to bilateral footdrop and severe leg weakness and broke one ankle and badly sprained the other. I was in hospital for 7 weeks. Came home with support from community response team. Came home wheelchair bound, stair lift, banana board transfers, using commode. Been home 5 weeks and i am now strugglung with banana board transfers, losing strength in arms, have lost fine motor skills in left hand and right hand deteriorating too. And all this in 8 months. Saw neuroligist at local hospital at end if October and she has asked for tests to be done again . She, like the hospital, thinks this has been triggered by chemotherapy but thinks progressiom is too fast to be just (??) polyneuropathy. Chemotherapy induced polyneuropathy is symmetrical and cime with pain. My condition has developed assymetrically and I have no pain.

My GP came yesterday as I was unwell and I said I think this is MND - but that this has never been suggested. He agreed that all my symptoms, although confused by cancer at start, are typical Of MND and it probably is. He is writing to neurologist as my next appointment not until end of March. So although not formally diagnosed I have decided to join thjs forum, if you'll have me, to try and pick up tips as to how I can cope.

So hello everyone

Anne xx

[Gillette]

Hi Anne, and welcome to the forum no-one wants to need.

My goodness you’ve had a basinful, haven’t you? I’m pleased for you that appointments are coming, albeit slowly. If you have any questions you could ring the MNDA Helpline for information. You’ll also find an amazing amount of help, support and information on here.

[Terry]

Hi Anne and welcome to the forum,

Crikey, you've had a rough journey. For the doctor to mention Mnd is surprising and it's so hard on you.

And following that, to say that you have a appointment in March is just ludicrous. Many of us waited for nearly three months but that was from the first symptoms.

I would go and see whether a private specialist is worth seeing.

I can't imagine what you are going through.

Do you have any other symptoms?

Please feel free to ask any questions or share things with us.


Best wishes, Terry

[Kayleigh]

Hello Anne,

Sorry to hear you have been through such a difficult and challenging time already.

Although you don't have a confirmed diagnosis yet, you are of course welcome here.

I hope your GP will continue to give you good support. It sounds like you are already getting some help from an OT or physiotherapist already?

Please feel welcome to ask further questions, if you would like to (and as already mentioned by Dina, the Advisers on the helpline are available if you would like someone knowledgeable and friendly to talk things through with).

Love
Kayleigh x

[Barry52]

Hello Anne and welcome.

I do hope that your diagnosis doesn’t point to MND but I hope your doctor can expedite this process. There are schools of thought that suggest MND can be triggered by trauma such as major surgery and you have certainly been through all of that and more.

As Terry suggested I would explore the private consultation route. I did this and within 6 weeks of probable MND I was into the NHS system for a second opinion.

Best wishes,
Barry

[Lynne K]

Hi Anne. Welcome to our forums. I'm sorry that you've had a really awful time the last year or so. If you can get your GP to contact your neurologist urgently they usually can bring urgent appointments forwards. If it is MND then you'd want to start on the only treatment available which is Rilozone. This can slow degeneration by a little. I've read that it can give us an extra 6 months approx. Other treatments deal with symptoms such as cramps.

Also you ought get referred to your local services. These are a Physiotherapist; a speech therapist and an OT (Occupational Therapist). You'd be referred to wheelchair services probably by your OT. I hope that all this isn't too much for you at this time.

Good luck with getting a sooner NHS appointment, or if you can afford it an appointment with a private neurologist, as Terry suggested. Take care, Lynne