Last reply 2 months ago
MS and Bells Palsy?!

So, a year and 3 months down the line being diagnosed with “inactive MS” being put on Avonex to then be taken off it 4 months later as It made me very ill and since being off treatment I have had 5 new lesions and all types of new relapses (fizzy feeling in my spine, MS hug, constant tingling) I now have also been diagnosed with Bells Palsy on top of it all, has anyone else experienced Bells Palsy with MS?? Feeling rather fed up now since they stopped my treatment in October and still waiting on finding the right one 😪

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


bas76
2 months ago

Hi @danr I was diagnosed in 2016, my first symptom was Bell’s palsy but at the time we thought it was just that and did not suspect MS until I got double vision about 6 weeks later. But in terms of the Bells Palsy I was given a course of steroids to take over about a 5 day period. Within 3 weeks I was back to normal, I was examined at my local hospital after going to A&E and they prescribed the steroids and did follow up a few weeks later to see if recovery was okay.


bas76
2 months ago

Oh yes I forgot to mention I was also put on Avonex which I started at the beginning of 2017, would inject on a Friday and my whole weekend was spent in bed then back to work Monday. Was like that for 6 months then my body seemed to get used to it and it wasn’t too bad got my weekends back. Unfortunately In November caught the flew and then had a relapse. Was suggested I change meds after an MRI showed new lesions, was put on a med called Cladribine which gradually decreases white blood cells in the hope it stops the progression. The great thing is don’t have to inject it was just a couple tablets for three days and that’s it for the year! Fingers crossed! Don’t get me wrong I it wasn’t easy getting my Neuro to take me seriously and I have moorfields eye hospital to thank as they were able to provide scans which showed new nerve damage to my eye which supported my complaints of not feeling well. Keep on them, and ask about alternative meds as I have heard more than one person on this forum say Avonex isn’t that great/successful.


danr
2 months ago

@bas76 thank you so much for your reply! As soon as I noticed I couldn’t move my left side of my face I went to my neuro and they booked me in for another MRI which I’ve now had and awaiting results in a couple of weeks time, I think they want to see if it’s a new lesion or not. I would take avonex on a Monday and it would usually have me written off til Wednesday/Thursday! I went for that one as wanted least side effects as possible, I’ve been doing my own research on the other treatments and was put off by all the side effects. I’m hoping when I speak to my neuro soon he will be able to explain them all a bit more to me.. just want to find the right one now! However always making sure it never gets the best of me and I hope you do the same 😊


strictlysoca
2 months ago

I feel a rant coming on about Avonex! I hope you can get some treatment soon and if the neurologist is still wanting to do this wait and see if you get more relapses then sack him or her and move to a better hospital with an MS centre. It’s so worth it as only one chance to to stay healthy. You don’t have to take this backward attitude to treatment.

Wishing you all the very best


stumbler
2 months ago

Hmmm, a diagnosis of inactive MS, but have a Disease Modifying Therapy (DMT) anyway, sounds a bit hypercritical.

And, new lesions and new symptoms! I’d be knocking their door down. This is your long term health that they’re playing with!

You need to have a view on what DMT you want. The latest thinking is to hit MS hard and fast, with the most effective treatments, to avoid accruing disability. The DMT also has to fit into your lifestyle. The following may help your decision process:-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

with in-depth detail about the DMTs here :-

https://support.mstrust.org.uk/file/DMD-Book-Final-WEB.pdf


bas76
2 months ago

@danr I hope the Neuro gets back to you soon, may be worth giving them a nudge by calling their P.A and perhaps say your face is not improving and you are worried etc? In my case because the Bell’s palsy developed before my MS diagnosis I was not under the care of a Neuro and the hospital just treated as Bell’s palsy which I was told is very common for children and pregnant women to get so did not really too concerned. Mine was also left side my eye mouth left side face. Don’t fret once you complete the steroids it will come back within a few weeks. Sounds like the Neuro is wanting to see what is going on MS wise and see if anything else is happing such as if your MS is active. The positive is that if so at least the Bell’s palsy has alerted them to act and hopefully they come back with options. Not sure if it may be worth seeing your GP also about the Bells Palsy and explain your concerns around not being put on the steroids, he/she should have better access to your Neuro. I found it took a lot of this and writing to my Neuro before they learnt I wasn’t going to be one of those silent patients who doesn’t ask questions and push (politely). Good luck, it will all work out, but if I could go back 1.5 years and had the option I would have opted for something stronger than Avonex with least side effects and better success rate. What I have taken now apparently has 70% success in stopping relapses, I have had no side effects aside from fatigue which I’m not sure is the drug. With this disease the neuros attitude seems to be soft approach and increase if not successful, whereas I now think maybe going in a bit harder in the begging and hedging your bets may be a better approach but every case is different I suppose. Good luck and please keep me updated. Seb


danr
2 months ago

@strictleysoca thank you very much 😊


danr
2 months ago

@stumbler yes they diagnosed me with inactive MS in October 2017 they told me I only had a handful of lesions and the only relapses I had experienced was optic neuritis. They decided in June 2018 to put me on avonex (having heard hardly any communication between that time) so I started avonex and it would keep me up all night severe hot sweats and migraines just very I’ll for around 5 days then I’d feel relatively normal then before I knew it had to take the injection again! So decided to come off this beginning of October 2018 since then I’ve had two mris and they have told me I have 5 new lesions across my brain and spine and waiting for my appointment with my neurologist in a couple of weeks. I was only 19 when I was first diagnosed and I feel like they aren’t quite taking me seriously and I feel like a pain when I call them or speak to them because I ask a lot of quiestions but I just want to know what is going on and I’ve accepted now this is what I have so I just want to find the right treatment to try and control it! @bas76 thank you so much for your reply unfortunately my GP doesn’t even look at me when I talk and never has anything to say and when I ask my neuro questions they ask if I don’t believe in them or trust them so I will perhaps consider writing to them if I don’t get any further with my neuro appointment in a couple of weeks! I’m glad to hear your treatment is working better for you. I think it is all trial and error however I don’t think it should of been going on this long now, considering 5 new lesions within a year I think is active MS yet they told me it’s inactive… ugh sorry rant over!


stumbler
2 months ago

@danr , Neurologists, Doctors and other medical professionals can be an arrogant bunch, so we have to be assertive, yet polite to ensure they do listen and do take us seriously.

They’d like us to sit and listen, nodding submissively and leave when they dismiss us. But, we have to be our own advocate to ensure that these Public Servants manage us properly, as we do pay their wages.

That is why you should do you homework on the DMTs, so that you can play an active part in any related discussions.

Good luck for your forthcoming appointment.


bas76
2 months ago

Your MS symptoms and experience with Avonex both sound very similar to mine. I have read another thread you posted and see you initially had optic Neuritis in your left eye. If you don’t count my Bell’s palsy my first symptom was my right eye, I then started Avonex in Jan 2017 and stopped Nov 2017 didn’t really agree with me too and I had developed lesion on lower spine and now optic neuritis on left eye. You do really need to keep on them as @stumbler said it is your health and the sooner you get it under control the better. For me my saving grace was moorfields eye hospital, I just went to their A&E and they did exstinsive tests which concluded nerve damage to my left eye. My Neuro was happy to keep me on Avonex and when I questioned him about another MRI he said no need till next year even though I had vision problem and was feeling extremely run down. After moorfields interviened and wrote to him with their findings he back pedalled big time got me back in for full MRI head spine ad back of the eyes along with contravision. This is how he then found new lesion on the spine. So for the best part of the first 1.5years after diagnosis I feel as though the neurologist thought I was just complaining for no reason but now they take me seriously and even discuss my case/MS in their meetings. I just hope that this period of time hasn’t caused any serious irreversible issues. Sorry if I’ve gone on here but I can see you may be in a similar position as I was. Not sure how far you are from Moorfields eye hospital but I swear by them, they first diagnosed my MS before I was put under the care of my Neurologist at what is supposed to be the leading Neuro in the UK/central London.


danr
2 months ago

@bas76 yes I did originally have optic neuritis a few years ago and they done an mri but found no other lesions so put it down to just being optic neuritis however I think that was the first relapse of my MS. I know I need to put my foot in somewhere now my neuro told me to stop thinking about MS and just to live my life to which I replied how can I stop thinking about something which affects my life? I have heard about moorfields but I thought they were a specialist eye hospital and as me being now diagnosed with MS thought they wouldn’t be able to help me! I’m about 30 miles away from central London so not too far I’m going to do some more research on clinics for MS! Thank you for your responses it’s always nice to speak to someone who has/is going through a similar experience 😊


bas76
2 months ago

@danr worth the journey for sure, they are an eye specialist but as the eyes are probably the easiest way to detect MS activity I find moorfields are able to run the relevant tests which can confirm your suspicions. They also have neurologists there too who are well versed in MS. Worth a wait in A&E for. Good luck, hope you have some success with this.

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.