MOTOR NEUROPATHY NEW DIAGNOSIS

[sunset709]

Hello
I have had numerous falls since August 2020 and have become weaker with muscle wastage and muscle twitches. I have high blood pressure with sudden drops and was referred to Cardiology and Neurology. After a fall a couple of weeks ago I was admitted to hospital for 5 nights and the Neurologist thinks I have motor neuropathy probably caused by my type 2 diabetes. I have been on Metformin for over ten years and told my diabetes was under control. I am now awaiting further tests and at home and without my wife would not be able to cope. She is Florence Nightingale and we also have had a stair lift installed and stopped smoking and now vaping.
My main problems are I am so tired and sleep or dose so much. I do not enjoy eating it is a real effort. I am scared of falling and so going out is really scary. They have installed rails to outside door entrances but the steps down are scary. I have to go for spine mri Friday and it making me anxious the journey and the scan. It a mobile scanner what happens if I panic or need to go to toilet?

Be great to talk to someone in similar situation
Any advice
Thanks
Steve
Any advice.

 

[Molly M]

Sorry to hear you are having such a hard time of it Steve. I can't offer any help re the muscle issues but as a carer to family members, you could ask if you could have patient transport to get to hospital. They would bring a wheelchair to the house and get you into it and into their transport. That way you could be reassured you won't fall and injure yourself etc and it would be one weight off your mind. Your wife may be allowed to come with you if they have room/Covid rules allow it.

Re the scan, make sure you go to the toilet as soon as you get to the hospital. Ask how long the scan normally takes. I've had a tumour and had several scans so just concentrate on your breathing and it will be over before you know it. It's just like getting a picture taken. Nothing intrusive. They usually talk to you whilst they are scanning you to reassure you. You may also be able to get them to put some music on if it's a longer scan. Good luck.

 

[mikeyB]

Hi Steve, welcome to the forum.

I spent three years having MRIs, lumbar punctures, EMG studies, PET brain scans to try and account for my motor neuropathy, and almost three years after installing a stairlift. All along, they thought it must be the diabetes, until it became obvious I had an upper motor neurone problem, which could not possibly be due to diabetes.

The spinal MRI will show whether you have MS, Multiple Sclerosis. That’s why they are doing it. Takes about 20 - 30 minutes, so a wee before you go in will suffice no problem.

If you haven’t had a lumbar puncture, then they aren’t doing a proper job. It’s coloured by the diabetes diagnosis. I assume you’ve had EMG studies.

If it all started fairly suddenly, it’s not diabetes. If it’s an upper motor neurone problem, it’s not diabetes.

I suspect you may be embarking on a long series of investigations, but while these are going on apply for PIP (mobility), it helps you get any aids you need, and if you are not loaded with money, the local Red Cross will lend you a wheelchair to confidently get out and about, and make sure you contact the Occupational Therapy team - your surgery will know how to do that- because they can advise on aids in the home, and supply any sticks or crutches you need to steady your walking.

As I’m well experienced with living with motor neuropathy, I don’t mind you contacting me via the Private Message system, but as a new member that will be unavailable for a while unless Admin can intervene. It’s a lifestyle change, but it’s so significant you need a lot of support early in the game. I’m fully adapted now.

 

[mikeyB]

By the way, I’m the same age as you are.🙂

 

[rebrascora]

Hi Steve and welcome.

So sorry to hear you are going through such difficulties with your health.

I certainly do not want to take anything away from the experience and advice offered by @mikeyB but I wondered if you self monitor your BG levels and if perhaps your BG levels have become elevated recently as many people have experienced as a result of Covid infection and occasionally the Covid vaccine. High BG levels can cause fatigue and a quite rare diabetes related condition called Diabetic Amyotrophy which causes asymmetric muscle weakness and wastage in the legs and hips.
Just wanted to offer a bit of hope because I believe this can be reversible with improved BG control.
Obviously, if your diabetes control is still good then this is unlikely but if you don't test at home and haven't had a recent HbA1c then it is possible that things could have gone haywire and you not realized.

Do you know the result of your last HbA1c and when that was?

Also many long term Metformin users assume that the medication is taking care of their diabetes but medication in itself is only a small part of the equation and dietary changes are usually much more powerful in managing diabetes and should be used in conjunction with medication (and exercise if possible) to improve long term outcomes for Type 2 otherwise it can become progressive. Apologies if you are already aware of this information, but I know from experience that NHS dietary advice for Type 2 diabetes is not ideal even now, let alone 10 years ago, so it is worth reviewing your diet if BG levels have increased and home testing is something which we very much encourage here on the forum in taking control of your diabetes management.

 

[sunset709]

Sorry to hear you are having such a hard time of it Steve. I can't offer any help re the muscle issues but as a carer to family members, you could ask if you could have patient transport to get to hospital. They would bring a wheelchair to the house and get you into it and into their transport. That way you could be reassured you won't fall and injure yourself etc and it would be one weight off your mind. Your wife may be allowed to come with you if they have room/Covid rules allow it.

Re the scan, make sure you go to the toilet as soon as you get to the hospital. Ask how long the scan normally takes. I've had a tumour and had several scans so just concentrate on your breathing and it will be over before you know it. It's just like getting a picture taken. Nothing intrusive. They usually talk to you whilst they are scanning you to reassure you. You may also be able to get them to put some music on if it's a longer scan. Good luck.

Thanks for your very helpful and reassuring reply

 

[sunset709]

Hi Steve, welcome to the forum.

I spent three years having MRIs, lumbar punctures, EMG studies, PET brain scans to try and account for my motor neuropathy, and almost three years after installing a stairlift. All along, they thought it must be the diabetes, until it became obvious I had an upper motor neurone problem, which could not possibly be due to diabetes.

The spinal MRI will show whether you have MS, Multiple Sclerosis. That’s why they are doing it. Takes about 20 - 30 minutes, so a wee before you go in will suffice no problem.

If you haven’t had a lumbar puncture, then they aren’t doing a proper job. It’s coloured by the diabetes diagnosis. I assume you’ve had EMG studies.

If it all started fairly suddenly, it’s not diabetes. If it’s an upper motor neurone problem, it’s not diabetes.

I suspect you may be embarking on a long series of investigations, but while these are going on apply for PIP (mobility), it helps you get any aids you need, and if you are not loaded with money, the local Red Cross will lend you a wheelchair to confidently get out and about, and make sure you contact the Occupational Therapy team - your surgery will know how to do that- because they can advise on aids in the home, and supply any sticks or crutches you need to steady your walking.

As I’m well experienced with living with motor neuropathy, I don’t mind you contacting me via the Private Message system, but as a new member that will be unavailable for a while unless Admin can intervene. It’s a lifestyle change, but it’s so significant you need a lot of support early in the game. I’m fully adapted now.

Thanks for your helpful reply. Since leaving hospital a few days ago the community neurological team have been brilliant. They installed a special bed chair toilet seat hand rails etc. The speech therapist helped with eating and physio shown me exercises to do. I am awaiting EMG tests no appointment yet. I have had stair lift installed which with my wifes help means I can now shower

 

[sunset709]

Hi Steve and welcome.

So sorry to hear you are going through such difficulties with your health.

I certainly do not want to take anything away from the experience and advice offered by @mikeyB but I wondered if you self monitor your BG levels and if perhaps your BG levels have become elevated recently as many people have experienced as a result of Covid infection and occasionally the Covid vaccine. High BG levels can cause fatigue and a quite rare diabetes related condition called Diabetic Amyotrophy which causes asymmetric muscle weakness and wastage in the legs and hips.
Just wanted to offer a bit of hope because I believe this can be reversible with improved BG control.
Obviously, if your diabetes control is still good then this is unlikely but if you don't test at home and haven't had a recent HbA1c then it is possible that things could have gone haywire and you not realized.

Do you know the result of your last HbA1c and when that was?

Also many long term Metformin users assume that the medication is taking care of their diabetes but medication in itself is only a small part of the equation and dietary changes are usually much more powerful in managing diabetes and should be used in conjunction with medication (and exercise if possible) to improve long term outcomes for Type 2 otherwise it can become progressive. Apologies if you are already aware of this information, but I know from experience that NHS dietary advice for Type 2 diabetes is not ideal even now, let alone 10 years ago, so it is worth reviewing your diet if BG levels have increased and home testing is something which we very much encourage here on the forum in taking control of your diabetes management.

Thanks

I am going to have a diabetes review next week and will certainly ask lots of questions. My diabetes over the last ten years has been controlled by Metformin two a day or at least I thought so. My annual HB1C has always been okay. I am having a back mri on Friday and awaiting further neurological tests. So far the neurologist has not said much and is awaiting the results of the tests. But up and till two weeks ago I was a smoker and have stopped and switched to vaping which he thinks was most important thing I could do

 

[mikeyB]

Good to hear the community neuro team have set you up properly. Now you just have to adapt to your new circumstances, it becomes second nature after a while. I’m sure it’s not due to lack of diabetes control, so just carry on what you are doing with that. It’s the neurologists who are chasing the diagnosis, so I wouldn’t bother asking the diabetes team, the diabetes is irrelevant

EMG tests are more or less pain free, it just feels weird while they twitch your muscles. And MRIs are noisy, so make sure they give you earplugs.

I’ve got hand rails all over the place in the bathroom. I use two elbow crutches to get around, plus “furniture walking” which I’m sure you’ve discovered naturally, shower seat and I’m soon to get a whole body dryer in the bathroom (like a tall hair dryer) which saves trying to towel yourself dry. If you can use your charm on the support team, they might arrange that for you.

Anyway, plough on, and enjoy being the centre of attention.😉

 

[trophywench]

Elbow crutches are brill when you have any balance or walking prob and could possibly assist you on your home outside steps because assuming you have them both planted firmly on the ground, they support both sides of you at once - hence you feel much more secure than with one handrail. They don't issue crutches to you, without 'teaching' you to use them first, to best assist whatever physical problem(s) you happen to have - walking on the flat plus going up steps and down them is part of the tuition - two physios at a time needed for that, in case you eg fall over so the physio needs to 'handle' you. Physically much easier to 'operate' with elbow crutches than the old fashioned 'under the armpit' ones, esp if you're 'weak in the arm' like me.

 

[mikeyB]

I agree with some of your post, @trophywench, but I can’t manage steps other than one crutch in my right hand and dragging up with the left hand on a handrail. I can’t do steps at all with two crutches. I suspect Steve will have similar problems.

Staying vertical is the key to moving around with a severe motor neuropathy, and you can’t do that using two crutches to get up steps. I struggle on sloping ramps for the same reason.

 

[trophywench]

Ah - thanks @mikeyB - clearly since I do not have motor neuropathy - I was unaware of the 'completely upright at all times' absolute necessity. Can you get an external lift - well I know you can - but only if you have room at the side of the steps to fit one, and a sufficient 'landing' area at the top of them, flush with the external door threshold, to use it safely.

 

[everydayupsanddowns]

As I’m well experienced with living with motor neuropathy, I don’t mind you contacting me via the Private Message system, but as a new member that will be unavailable for a while unless Admin can intervene. It’s a lifestyle change, but it’s so significant you need a lot of support early in the game. I’m fully adapted now.

I’ve enabled Private Messaging on your account, if case you would like to take up Mike’s offer @sunset709

 

[sunset709]

Good to hear the community neuro team have set you up properly. Now you just have to adapt to your new circumstances, it becomes second nature after a while. I’m sure it’s not due to lack of diabetes control, so just carry on what you are doing with that. It’s the neurologists who are chasing the diagnosis, so I wouldn’t bother asking the diabetes team, the diabetes is irrelevant

EMG tests are more or less pain free, it just feels weird while they twitch your muscles. And MRIs are noisy, so make sure they give you earplugs.

I’ve got hand rails all over the place in the bathroom. I use two elbow crutches to get around, plus “furniture walking” which I’m sure you’ve discovered naturally, shower seat and I’m soon to get a whole body dryer in the bathroom (like a tall hair dryer) which saves trying to towel yourself dry. If you can use your charm on the support team, they might arrange that for you.

Anyway, plough on, and enjoy being the centre of attention.😉

I’ve enabled Private Messaging on your account, if case you would like to take up Mike’s offer @sunset709

Thanks

 

[sunset709]

The hospital showed me how to use crutches but agreed my arms to weak to use
Are house has very deep thresholds at doors 18 inches so I am very nervous going outside. The grab rails do not help. I have a fear of falling forwards. I thought a sideways ramp with rails would be answer but not sure not actually tried ramps much.

 

[mikeyB]

If your arms are too weak to use crutches, you won’t be able to use a self propelled wheelchair. A ramp to walk down won’t be much use, except for a wheelchair. Ask your support team whether you could get a powered wheelchair. It’s not giving in to use a wheelchair, it completely removes the fear of falling over.

I suggested a power wheelchair because you don’t want your wife pushing you around, folk will be asking “does he want milk in his coffee?” when you’re in the local cafe. It does happen, believe me.

And the fear of falling forwards goes with the motor neuropathy. So does falling backwards when you close your eyes while standing up. (I tried the latter in the bedroom by the bed so I had a soft landing🙂)

 

[mikeyB]

I’ve enabled Private Messaging on your account, if case you would like to take up Mike’s offer @sunset709

Thanks for that, up and running🙂

 

[everydayupsanddowns]

Thanks for that, up and running🙂

Good stuff!