Bad Week

[mathematics]

My husband who has secondary progressive MS has had a really bad week with sciatica pain. Trying to obtain help to control the pain so he can get some sleep has been an absolute nightmare where we have obtained help from unexpected avenues such as a pharmacist and an A and E hospital doctor. Unfortunately had to send for a wheel chair today as his mobility has taken a turn for the worse, might be due to all the meds he has had though as well. He has been managing to keep mobile with his stick but if appears to us if you are ill it does affect your MS even if his MS nurse won't have it. Never mind take care everyone.

[falalalala]

I had problems with sciatica years ago and a chiropractor got rid of it.

Getting ill definitely affects my MS. I hope he heals quickly.

[mathematics in reply to falalalala]

Thank you a chiropractor maybe a good idea

[falalalala in reply to mathematics]

I hope he gets relief.

[starlight5]

Curious, what do you mean his MS nurse wont have it? Did you mean she doesnt believe his MS is worse when he is ill? That is common knowledge so I am guessing I misunderstood🤷‍♀️

[mathematics in reply to starlight5]

She does not think that he can be in pain with the sciatica and MS at the same time or that the sciatica could affect his mobility, especially as he was tired and hadn't slept for 6 nights. We have a new MS nurse, who we are not really seeing eye to eye with at the moment. All I know is that my husbands balance and walking has deteriorated to the point when out at the GP's and hospital I had to use a wheelchair as he was unsteady. In fact I could hardly get him into the car to the GP's without the help of the next door neighbor. Admittedly he has been taking strong drugs to try and get the pain under control as well. It is just been a really bad week.

[NorasMom in reply to mathematics]

Can you request a different nurse? She's clearly unsuited for the job and poorly educated about MS. This is like saying you can't have a toothache and a broken toe at the same time.

[mathematics in reply to NorasMom]

Yes I am going to ask for a different nurse but I'll have to do it probably after we have got this all under control. My husband has had another bad night in pain and his mobility is no better. Accessing help is hard work and trying to remain calm and diplomatic is not easy either. He has had MS since 2011 and worked up until about 2 years ago, from what I have read it could be his body with wear and tear compensating for the MS. His knee is giving him real bad pain at the moment. However the nurse will not have it and his GP will only really give us over the counter pain relief on long term which is not touching the pain or are really rude and say has he been drinking or is he on drugs and I should have taken him to A and E. Of course the tireder he is getting the worse his mobility and balance hence the need for the wheelchair, which is coming today.

[starlight5 in reply to mathematics]

I am sorry to hear this. Yes, we find ways to compensate and then end up with other issues because of it. Hopefully the chiropractor visit will provide some relief.

It sounds like this nurse has a lot to learn and is not a good fit for your husband and his pain issues. 🙁

[mathematics in reply to starlight5]

No but it is no good getting angry with her we are going to have to request a new nurse. He got on well with his old nurse. Never mind he has retired which is why we ended up with her.

[Greentime in reply to NorasMom]

Good example! It would be funny if it wasn't so serious.

[mathematics in reply to Greentime]

Yes I agree it could be a comedy sketch other than its real and my husband is in pain. When the lovely doctor at A&E said you don't get pain with MS I did not know whether to laugh or cry either.

[CatsandCars in reply to mathematics]

Wow, that's shocking. I was blown away that doctors used to think that about it. You see all these people come in complaining about pain, but it's just a coincidence? But to have that belief now is just insane. I sure hope the chiropractor helps him. 🙏

[mathematics in reply to CatsandCars]

Thanks, also he's got a physiotherapy nhs telephone appointment on Friday so fingers crossed as still in pain

[Peruzzot]

I had sciatica in my right leg awhile back. Pain meds did nothing for me, except make me feel even more tired and foggy headed. Stretching helped some, but a chiropractor helped a lot more.

[mathematics in reply to Peruzzot]

Thank you

[mathematics]

Just booked up a chiropractor for next week, first available appointment, fingers crossed.

[Robsmom]

So sorry for your husband's pain. I suffered with sciatica for years and it wasn't until a PC realized it was triggered by muscle spasms in my back from my MS. Stretching and muscle relaxers helped get rid of the pain. And yes, illness of any kind makes your MS symptoms worse.

[mathematics in reply to Robsmom]

Thank you, he is constantly in pain, which does on occasions go down both his legs at same time, but then it is only mild. He also gets pain down his left leg but it is not so bad then, this pain has been excruciating down his right leg. Yes I agree any illness affects your mobility and my husbands mobility has taken a downward spiral last week and he is so unsteady on his feet. He also gets pain in his arms back and shoulders but the MS nurse is refusing to say it is anything to do with his MS it is all to do with his sciatica. However we have a chiropractor booked up for Wednesday so lets hope. Thank you again

[bookish]

Hi, sciatica can be caused by low vit B12. Even if your husband is not deficient then B12 can be used successfully as part of treatment for any nerve condition. It is often low in MS and there are connections between the two, so it would be worth checking thoroughly (not just a serum test!) and perhaps asking for a therapeutic trial of injections. Oral supplements cannot be relied on - they raise blood levels for most but do not help with healing nerves in all cases. And they will skew the test results, so please test first. Cheers

[mathematics in reply to bookish]

Thank you I will try and ask about having some. Do you know how you go about obtaining a therapeutic trial of injections in the UK. Don't worry if not I will google. I have googled it and will need to go back to the GP, He has got lesions on his brain etc that show he has MS according to his MRI scans although these are not active at present. Whether I can get my GP to investigate this avenue remains to be seen at the moment but thank you I will ask.

[bookish in reply to mathematics]

Hi, I would hope that serum B12 and folate have already been checked, so you could find out what those were if you don't have the results. A frank deficiency is not impossible - but don't take folic acid until B12 has been started, as it could make things worse. You could also ask for methylmalonic acid and homocysteine to be checked, as they can indicate a deficiency that is missed by a serum check. An 'active' B12 or holotc should also be done and if possible anti-gastric parietal cell antibodies and anti-intrinsic factor antibodies. But there are many places where these processes can go wrong and there are no tests to absolutely rule it out - a cellular deficiency can be present at any serum level, and improvement is possible from any serum level - so either the GP or Neurologist for a trial. Good luck

[mathematics in reply to bookish]

Thank you I will ask the GP and see what he says

[Cwright170994]

It's good that you've got a wheelchair on it's way for your husband 🫂 I started having to use one back in 2019 because my legs were too tired to walk more than a few steps. My husband had to give me a piggyback to a mobility kiosk when we were at the Trafford Centre, and that's where I'd admitted that I couldn't rely on just my walking stick. So, I got a manual wheelchair, which is really easy to go around shopping in and fun to go down slopes. I've got myself an electric wheelchair for when my husband's at work and I need to go places without him. And now my physio has got me a rollator and a full suit of lycra to help me stay on my feet.

For your husband's pain medication, have you tried cocodamol (Codeine and paracetamol)? You might have to get a prescription, but I do remember being able to get one called solpadiene for my nanna one day when I was able to freely walk. You can buy it over the counter from Boots or a pharmacy.

[mathematics in reply to Cwright170994]

Thank you for your reply yes you get to a point you have to admit you need a wheelchair and my husband has accepted it. Especially after the struggle getting him to the GP last week and we had to borrow one from the surgery. He has tried codeine but it bungs him up really badly and as he has problems that way prefers to use other painkillers. At moment the tramadol are working although he has not got many of them. We will probably consider an electric mobility scooters eventually. We are hoping if his sciatica improves his mobility which has been assessed as EDDS 6 anyway will improve. So we are hoping Wednesday at the chiropractor will be productive. Take care

[Cwright170994 in reply to mathematics]

Fingers crossed that the appointment with the chiropractor works well for him 🤞

[mathematics in reply to Cwright170994]

Thank you

[irhunter]

Sorry to hear! I also have lower back pain that many Drs used age related arthritis and compression as the reason and not diving deeper to find the MS. Very long story short… my orthopedic surgeon gives me quarterly “shotgun” corticosteroid injections as opposed to the direct injection at the normal location near the vertebrae (foramen?). It’s amazing! I get immediate relief that lasts months. I’m one week out from my next injection and my back is slowly ‘waking’ up. Grrrrr, I feel it! Both my Neuro and Ortho Drs agree it’s probably MS related BUT if it works and is safe, why not! I hope he can find relief!

[mathematics in reply to irhunter]

Thank you

[CatsandCars]

I have nothing practical to add that nobody else has already said, but I'm so sorry to hear what you and your husband are going through. It's a different disease, but when my late husband was suffering from cancer in his forties, there were a few points where he was very sick and it was hard to get anyone to understandwhat the problem was, even though it was obvious to me. He was previously a big strong guy who had been a Teamster, such a character with a huge personality, and to see him so sick was horrible by itself. But dragging him around to the ER and various doctors when he was weak and unable to eat had a real nightmare quality to it. You are doing a great job advocating for your husband, and I pray that this episode will pass soon. Once the pain is taken care of and you both get some rest, things will calm down again. Remember that even though it feels like it, you're not alone. Please hang in there, and let us know how you're doing. ❤️🙏

[mathematics in reply to CatsandCars]

Thank you so much for your kind words take care yourself as well. His wheelchair has come and he is, thank goodness really pleased with it. He said it is going to be embarrassing for him to go out in it but what can you do. Sorry to hear about your late husband as well. Thank you again.

[mikey1994]

I have MS and had an episode that lasted 5-6 days straight. I thought of it as sciatica x100! It affected me from my chest area down to my right ankle. It was excruciating. It wasn't constant and always happened in the middle of the night and would last 2-3 hours. We tried steroids, which didn't do a thing. But what did work for me was gabapentin. It was that my nerve endings were "on fire". And it calmed them down and made the pain very bearable. Then after a week it went away. That was four years ago.

[mathematics in reply to mikey1994]

Thank you for replying my Husband has tried amitriptyline and gabapentine in the past but as its now a controlled drug the doctor won't put it on repeat so he will only give it for an acute episode but not for chronic pain. It did work but we could not work out if it was gabapentine or the fact the pain went by itself as it takes up to 6 weeks to kick in. He was given baclofen this time initially but it did not touch the pain. Hope you are ok now and coping with your ms take care.

[AquaZumbaFan]

I went through a huge episode for almost 2 years with pain that migrated from my quad to my knee and eventually went down my leg all in the left side.. long story short and a whole lot of PT, trials on medication with different doctors. Finally saw pain management. Who found out that I had bulging and extruding discs in my lower back L3 and L4. he is able to do injections in the operating room With Xray guidance… He has brought me from a pain way over my perceived 10 to virtually nothing. The first injection lasted a good four or five months. I had to redo it the beginning of April and I’m going strong.. I was just shopping on Amazon before the first injection for a wheelchair..I am much more pain free than I have been in years.. getting around with nothing in the house and a cane or two on uneven ground outside.. best of luck let us know what happens please

[mathematics in reply to AquaZumbaFan]

Thank you it is an avenue we need to try its just accessing the correct help but thank you I could ask for a referral by our GP for pain management but probably will have to pay privately.

His GP seem insistent on physiotherapy at moment. Thank you

[AquaZumbaFan in reply to mathematics]

Believe me I understand… You just have to go with what the docs suggest.. I think I did PT for at least four months until even the physiotherapist agreed that something must be coming from my back back and the whole thing just didn’t make sense that the pain in my thigh knee and lower leg were orthopedically related. I tried really hard to follow the program I really did not want that pain. It was truly the worst of my life.. the whole time I was telling everybody I was pretty sure it was somehow neurologically related. I guess it was from the protruding and extruding discs.. I had had a normal MRI of my lower back before all of the pain and crazy symptoms of suddenly it was like I did not even have anything from the knee down on that left side, which I discovered as I was walking down my steps.. luckily I was only a few, but I took a tumble. We all just thought it was my MS advancing. 🙏🏼🤗🙏🏼

[mathematics in reply to AquaZumbaFan]

Thank you we do have a number for a Physiotherapist so we will ring up the self referral clinic and see what happens. We are hoping the chiropractic clinic will work this week. Thanks

[mrsmike9]

"Never mind"???? We all mind and care! You have a lot of messages of caring here. Make sure to take care of you, too.

[mathematics in reply to mrsmike9]

Thank you everyone has been very supportive and the advice has been really helpful you are right.

[mathematics]

Went to chiropractor back in A&E having a MRI too many red flags apparently.

[mathematics]

Had MRI in A and E today and the results came back with things not right that needed addressing by orthopedics and neurology so my husbands GP is going to have an email tomorrow telling them to urgently refer him to these departments. The chiropractor was brilliant and so was the nurse practitioner at the hospital. We have some results at long last. His problems are apparently not all due to MS either. Thanks for all your advice on this post.