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Getting worse quickly before diagnosis

I’ve had a bad left knee for years, but the ortho wouldn’t give me a TKR at the time because I was too young at 58. Now I’m 60 and getting fed up with limping around, and my balance hasn’t been good at all. I saw a different ortho 4 weeks ago, and he watched me walk across the room, and said “A new knee wouldn’t help you!” I haven’t been able to feel my legs for a number of years, and the pins and needles have been getting worse. He said that it looked neurological, and I had a MRI a couple of weeks later. I have an automatic car, because of problems with the clutch, and it’s been fantastic, but I have recently been very heavy when braking. I have used a walking stick for a number of years to get to work, but not in the lab - I work in a microbiology laboratory. I now have to use it in work, and my balance seems to be getting worse by the day. We went away for a short break last week, and I didn’t really enjoy the bank holiday traffic. I realised when we were in the restaurant that I had to rely on my wife to support me, even with using a walking stick, which has never happened before. Although I will not be contacted by the ortho team until 16th September, I’m worried that there will be an obvious delay while they refer me to a neurologist. In the meantime I seem to get worse by the day. I had my first day back in work today and I struggled. Worse is the fact that I’m on call this Sunday. We work usually 9-5, or longer at weekends and then on call overnight. Covid testing is a big strain too! As the penny dropped when we were away, and I thought it could be MS, I am just waiting for someone to mention to me that I am struggling to get around, and whether I am fit enough to work. I’ve stumbled quite a few times in the lab over the last few weeks, and I am very careful to try an minimise falls. Working in the NHS we rely on on call, especially at weekends, and it would be a huge loss financially to lose the out of hours work, plus there are only 4 of us on the rota. It seems that if I have MS, it’s going to take me some time to get proper help and advice, from professionals, and every day it seems worse! I’m hoping that I can get through the week and do my on call. I must admit I have been very depressed, which is not like me at all, since I realised that there is more to my condition than my left knee. The worry about my job, my mortgage, and whether I soon will not be able to drive (my wife doesn’t drive), is making my physically ill, and I have no appetite at all. I am going to phone my GP tomorrow to see if I can see him to get in touch with specialists to help me, but until my diagnosis is confirmed, there is little I can do. We were going to drive to Shetland in 6 weeks time for a week away, and we have paid for the ferry, but I will have to make a decision soon on whether I am confident to drive a couple of thousand miles. Any tips for driving with a drop foot? Jeff

I’ve had the drop foot thing for years now and have tried the NHS ‘attachments’ and they didn’t help me so I had to make my own. I ended up with a football shin pad from sports direct and a piece of 1" wide elastic riveted to it with a rubber triangle at the other end of the elastic that slotted in my laces to hold my foot up but it didn’t restrict me pushing my foot down. The NHS velcro ones were just pulling my footwear on too much and didn’t have the angle to lift my foot. I’ve attached some pics so you can get the general idea.



Your home made foot drop orthosis looks similar to the Boxia: BOXIA A.F.O. DROP FOOT | Orliman

I used lots of different devices to help with foot drop over the years and the Boxia was the best, apart from FES (which is a whole different ballgame).

Well done for figuring out what helps and making your own. It’s brilliant.

Sue

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Hello Jeff

It sounds as though you could consider having your car adapted for hand controls. Your braking might be too heavy, but so could your acceleration in time.

I decided years ago (2006) to have my driving assessed by a mobility testing centre (you can find one of these here: https://www.drivingmobility.org.uk/ ). I was concerned about my reaction times. In fact when assessed I was told my reactions were just about legal. I decided to have my car adapted anyway and actually had a few lessons with a specialist instructor.

It made quite a big difference to my driving ability. Not least was the confidence I felt. I’d been worried about not being able to control the brakes well enough and so put people (and animals) at risk.

It does sound like a neurological examination and perhaps testing would be useful for you. Your GP should be able to refer you to a neurologist, although there may be a long wait; all hospital waiting lists have grown longer due to Covid.

Best of luck with your driving and getting a neurological work over.

Sue

Quite a few things happened very quickly after I posted this. The GP phone call was very frustrating, with little empathy, the attitude was “You are jumping ahead of things and you need a diagnosis!” There was no understanding of the fact that I have peripheral neuropathy, which was getting alarmingly worse. I was in work Tuesday - Friday last week, and every day I was getting worse. On Wednesday night I got called into the lab for an urgent specimen at 02:00. I struggled driving, but at least I got the following morning off, and could phone the GP, although he wasn’t very helpful. I was on call last night, and I had quite a few spasms and pins and needles in my legs. It had been a very busy day, and at the end we went to get some food, and I struggled driving again. I was very unstable in the restaurant and had to use my walking stick and support my other hand on the tables. During the night I had no sleep at all, and went more times than ever to micturate. By 3:30 I’d decided that I couldn’t work on call on Sunday day and night, and that I would go to A/E first thing in the morning. I got a taxi to the hospital. I saw an orthopaedic doctor. I explained to him that it was only 2 weeks ago when I had the MRI, and initially I had no problems driving, even though I couldn’t really feel my right foot. While we were away in a hotel I had no real problems driving, until we were driving 6 hours back home stuck in motorway traffic. The driving, after a full day on my feet, got worse as the week went on! I was hoping to complete my on call this week, and then sit down with my manager and discuss my mobility and driving issues next week. On Friday I stumbled a few times but was lucky that nobody noticed. Eventually the doctor found my notes in the system, saying that I had peripheral neuropathy and to refer me to a neurologist. I live in rural Wales, and the neurologist is based in a hospital 1.5 hours drive away. He told me that if I could get a taxi and attend A/E on Monday, then it was likely that I would see a neurologist. He said that he’d looked at my MRI, and it looked clear, but the Radiologist had not reviewed it yet. I contacted my lab manager and told her the problems I was having with my mobility and driving, and she had to make other arrangements for Sunday. My wife has always been a nervous passenger, my current lack of confidence is not helping her in this respect. I literally drove 5 minutes today to the local club to have breakfast. I feel that I need to perserver with driving otherwise we will not go anywhere. I am going to not go to work next week and not do on call, to give me a rest, but financially I need to work and I need to overcome my drop foot. I’ve ordered a splint which is delayed. We’ve cancelled the trip to Shetland. My car is an expensive lease and costs me £475, but initially it was a joy to drive, I need to sort driving out, and I need to get my confidence back. I got a letter from the Neurologist today to say that if I don’t go to whichever hospital they work at, rather than my local hospital there will be a delay. I’ll go wherever they are based and will get a friend to drive me there.

I’m going to have to make a rapid decision about my car. I went out for a short drive yesterday, and it wasn’t good. I only have 2 options - modify it to brake and accelerate using hand controls, or give it back, and have no transport! My wife doesn’t drive and we live in rural Wales, so we’d have to get taxis. I will be finding out tomorrow how much it will cost to have hand controls. Will it be worth it, or will I feel useless paying thousands of pounds for limited benefit? Personally, I don’t want to be without wheels. Plus, if I wanted to work, I would need transport. I will be meeting with my manager next week to discuss my work situation, and was hoping to use “Access to work” to assist me and my mobility. I had hardly any sleep, the night before I went to casualty, and so slept well on Saturday night. However, last night I couldn’t sleep at all, and I’m typing this at 04:00! I have been taking tamsulosin for a couple of years for BPE. About 3 months ago I contacted the Urologist to say that the tablets were not as effective, but they never replied to my emails. Little did I know that I was having a double-whammy. My GP will say that I shouldn’t be getting ahead of myself, but I am not exaggerating to say I got fed up getting up about 8 times after 11pm! I’m going to phone him tomorrow because I cannot function without sleep this way. On top of all this our mortgage deal is due up, and financially we would struggle if I cannot do on call. I am hopefully exploring options, but I only have 4.5 years left on the mortgage to take me up to 65. Reading some cases on this forum, I doubt that I will be able to work that long. I work for the NHS, so at least I get 6 months full pay, but I was hoping not to have to retire early on Tier1 health grounds. Equity release might be the only way? It’s impossible not to feel depressed going through everything, having to guess what to do, and make important decisions without a confirmed diagnosis! The other thing is I love my job as a Biomedical Scientist, and are actively involved in training the next generation of scientists. Obviously, any memory or cognitive impairment would finish me off! An hour until the wife wakes up for work - time for a couple of wees and back to my restless bed!

Hello Jeff

Blimey, you have it all going on. I’m surprised you’re getting any sleep with all this lot whizzing through your head in addition to getting up to pee 64 times a night!!

First, I think it is worth getting your car adapted. Many people drive for years and years with an adapted car. It sounds like you badly need a car; a) because of your location and b) to enable you to keep working.

Second, get a simple device in the immediate short term to help your drop foot. Look at https://www.ossur.com/en-gb/bracing-and-supports/foot-and-ankle/rebound-foot-up or Boxia™ Drop Foot AFO - Free Standard UK Delivery - Orthotix UK Both are available on that site which is also the name of a South American river! (For about £50 and available for next day delivery). Given the choice between the two, I’d go for the Boxia. Although the Foot-Up has been redesigned so that probably works quite well too. (I’ve used both.)

In the long term, see if you can get an NHS referral for Functional Electrical Stimulation (FES). Some areas (including mine in West Sussex) will not pay for FES on the NHS. But most do. You could ask your GP for a referral.

On which note, your GP needs to see your foot drop. Regardless of diagnosis, having foot drop is real and often does not improve once you have it. So with all due respect (!) your GP is wrong. You are not jumping the gun, putting cart before horse or any other metaphor. You need help with foot drop irrespective of neurological assessment.

Equally, your Tamulosin is not working. There are other drugs available for BPE. Your GP (again) could switch your drug. Or whoever diagnosed BPE and originally prescribed Tamulosin could be approached. Again, this is something you know you have, it’s not going away and a different drug might work better.

If you got your foot drop sorted and your car adapted, there’s no reason why you wouldn’t be able to continue working for the next few years. This is especially true if you start being able to sleep better.

None of these solutions require a diagnosis. That doesn’t mean you shouldn’t take all necessary steps to get a proper neurological assessment and find out what is going wrong.

Sue

Cheers Sue. I’m seeing the GP tomorrow after being insistent about my peeing problems. He’s going to have my urine cultured, and going to examine me, and ask the Urologist to re-assess me. I was going there for some blood tests, so it’s good that he listened to me, and is going to examine me. I’ve asked him short-term for some sleeping tablets. I was close to giving up the car today, but my Citroen dealer in Carmarthen were very helpful and put me onto LTC in Trostre, who are willing to drive 2 hours here, pick up my car, fit the adapted system and drop my car off! I can’t wait because even driving my car to the local garage, which is 300 yards away to put some petrol in, was pretty dangerous. The car will be staying on my drive until they pick it up next Tuesday, and return it the following week. It’s costing me £1185, which includes £150 for picking up and dropping off the car. Thank God I saw this video about the Jeff Gosling Hand controls, otherwise I wouldn’t have ordered the indicator switch and removable steering wheel ball! Jeff Gosling Hand Controls - Push/Pull Brake Accelerator - YouTube Thanks for the tip about the FES - they do it in my local health board for GP referral. I’ll mention it to him tomorrow. Yes I want and need a proper neurological assessment, but the hospital in Carmarthen is 1.5 hours away. When I can drive with the hand controls, things will be much easier. Today was a day that gave me something positive, and I’ve only had 3 pees since going to bed tonight! It’s only 00:15 though!

Hi Jeff

I’m glad I was helpful.

When you get your car back, you’ll need to practice a bit with hand controls. It’s a weird way to drive after years of using your feet and having a free hand to do things like open the window, change the radio channel etc. The worst is when you have to go through a car park barrier. To stop the car, put the brake on, open the window, stick your ticket in the machine, wind the window back up, brake off, etc. It’s worse in the rain. And of course it rains a lot in Wales!

Once you get the hang of it, you’ll find it’s easy. Apparently some people have trouble with the push pull accelerator/brake. To me it made total sense that you’d push for acceleration and pull for the brake, but apparently there are people who don’t find that is self evident.

Best of luck with it, and with the FES too.

Sue

Thanks for the tip about the car park Sue! Otherwise I’d be flumoxed, whereas now I’ll make sure that I visit one and practice after I’ve had a few trips in it!

Cheers

Jeff