Loosing sensation in right leg?

[Adlon57]

I am 64 years of age, have schwannomatosis, had operations for removal of benign tumour on spine in 1997, never fully removed as was attached to spine. I have had many examples of a 'dead leg' where I lose sensation in my right leg, I am able to walk, but have intense pain on the bottom of my spine, my right thigh is also very sore, annoying intense pain. I am currently waiting for an MRI for growth around my prostrate gland [10th July 2020], those started about November 2019, MRI inspection was delayed due to Covid 19 pandemic. While lifting a concrete block, gardening, on Thursday 23rd June, I thought I pulled a muscle in my back? The sensations in my leg have now worsened considerably, about 8 of 10, I cannot sit down for more than twenty minutes [pardon me whilst I walk around to relieve pain, this is a bad one!] Do you think these could all be inter-related?

[hunter5582]

I would say yes to things being connected. What you are describing in the leg could be related to issues with the nerves in the spine, inflammation from a back injury, blood flow issues in the leg - or some combination. Or something else entirely. Something I have learned regarding lower back pain is that it is integrally related to muscles in the hip and thighs. Issues with the psoas and iliacus (hip flexors) as well as the musculature in the upper portion of your legs absolutely are related to back pain. And vice versa. MPN related systemic inflammation just makes things worse.

Given the level of pain you are describing, I would say this is an urgent issue rather than elective care. I would follow up sooner rather than later. It could well be all related to issues with musculature and not be such a big deal as issues with nerves would be. Definitely let your hematology team know just in case the MPN is involved.

Hope you get some relief soon.

[Adlon57 in reply to hunter5582]

Yes a straight visit just after my email to yourselves, to A&E , proved correct, a bit more serious than I thought, a full MRI lined up for tomorrow! I had an MRI for my prostrate on the 10th cancelled now for the full job. Worrying?

Thanks!

[hunter5582 in reply to Adlon57]

They should have prioritized this all along. Don't see that it is any more worrying - you are just getting the proper response this time. You could have separate issue with back/legs from the prostate neoplasms, but it could be related. Now you can find out. All the best my friend. Let us know how it goes.

FYI - Just saw a note from lynnieb who also has NF. Now there are three of us. We should form a club.

[Adlon57 in reply to hunter5582]

Just been 'pushed' around, told I would have two MRI's this morning, Coronavirus come first, so absolute waste of time this morning, roll on 10th July? At least I got some pain killers, and a warning if I wet myself, get to hospital, I'm on the serious list! Lovely??

Like to get in touch with lynnieb myself?

[hunter5582 in reply to Adlon57]

Waiting until July 10 depends on whether you are willing to accept it. Sounds like a deficient response to me, but you are the best judge of what is or is not OK. I would take to up the chain of command a file a formal complaint. Hospitals here have a quality assurance branch whose job is to resolve patient complaints when things do not go well. Sometimes you have to file of formal grievance. Assertive patients receive higher quality care. Passive patients do not. It is your decision what to accept or not accept.

Lynnieb just posted yesterday. Here is the link to that chain.

healthunlocked.com/mpnvoice...

[Adlon57 in reply to hunter5582]

Unfortunately I can see quite plainly where my body is going, Wheelbound! I overheard in 2017, the doctors mention, "he will be wheelbound, within five years !" when getting x-rayed after a bad seizure, honestly I can't see any other conclusion! Thanks for Lynnieb link!

[hunter5582 in reply to Adlon57]

Strongly suggest second and third opinions on that wheelbound thing. If it happens - get great wheels! Something gas powered. Capable of 0 to 60mph inside of 5 seconds. All wheelchairs should do this. Personally, would mount high-powered automatics in 45cal as well. 4WD would be preferable. Light bar and siren would be optional. Maybe Tessla can come up with something electric if you want something quieter.

Keep pushing for the care you need and deserve. Sounds like you may need a better care team. It is up to you to make it happen, Push for what you deserve in your care - otherwise you will not get it. If you have to end up in a chair - it should only happen because there really was no other option.

[Adlon57 in reply to hunter5582]

Things really happening recently, Guy's Hospital, London, just been in contact, going to stir things up, they are getting in contact with my Local GP now, about meeting about me, Monday meeting with them again. Now very shaky on both legs? Visit to them in London definitely now in pipeline!

I wanted to move house, looks like will be a bit sooner, two story house not very viable anyway, last six months chaotic! That wheelchair option was not going to be fully stamped, but doctors in A&E agreed it was highly likely, and I should get ready for possible circumstances? I've known for twenty three years this might happen, my right leg sometimes goes numb, even able to stick a pin or sharp stick into it to get some feelings back! There is a young chap wheel chairs all around the town, batters his stick on a door for general attention for 'someone' to open the door for him, in general supermarket stay away from him, he can clip your ankle? Nasty arrogant wee so and so!

Thanks for your advice, but as you see a lot is and has happened in the last couple of months so replies could be intermittent!

Stay Safe

Adlon 57

[hunter5582 in reply to Adlon57]

Sorry to hear things have taken this turn, but glad to hear you may finally be getting a proper response regarding your care. Keep pushing. Never surrender your rights to quality medical care. Medical care systems sometimes need to be pushed to provide proper care.

It does sound like a move is in order. Hope you can find a more accessible dwelling ASAP. It will certainly make things easier. Perhaps a move will change the venue for the base of your medical care. Might be a good thing.

Sounds like the young chap in the chair has a bit of an attitude. If his local market does not have an accessible entrance, I can understand the attitude. Life in a chair can be a challenge, with many barriers the rest of us never see. Hope you are able to avoid that situation, but if you do then you will figure how to make it work.

I do hope that amidst this troubling turn of events you will find support and strength to cope. Don't lose hope and keep things moving forward for yourself as best you can. It is easy to loose sight of the joy in life at times like this (been there and done that). Suggest you find at least one rally fun thing to do each day. Don't loose your sense of humor as it can be one of your greatest coping mechanisms. It sounds like you have some tough times ahead. Know that you are no alone and that you can reach out when you need support.

All the best to you my friend. You will be in thoughts and prayers.

[Adlon57 in reply to hunter5582]

Yes a closing of one door and the opening of another. As Eric Idle would sing "Always look on the bright side of life" the Irish sense of humour is always rather dark, that's why my big sister emigrated, could never understand them! Make a pun or joke with your doctor or GP always lightens up the situation! Okay sometimes they might need a dig up their medical posteriors at times? Like I said to a close friend when this medical pandemic situation started, "Don't worry I will survive, I'm a stubborn old bugger!" All the very best and may your God go with you!