xeno 16/01/17
Last reply 1 year ago
Suffer in silence or run to the Doctors

Hi all,
Just wondering what all those diagnosed do whenever they have a bad patch.
I am currently going through a rough patch, 5 weeks long so far.
Currently numb on about 60% of my left side also less numb patches on my right side, my feet feel like they are burning with ice burns (hold a handful of ice cubes for as long as you can to get the idea)
As of today finger tips are starting to feel the same.
Multitude of other symptoms I could bore you with but I think you get the idea 🙂

My query is do you go to the Doctors whenever relapses happen or do as I do, which is suffer in silence.
Reason being is that my Doc’s are just not interested in helping as apparently there is nothing they can do.
Example, I suffer quite badly with random dizzyness, vertigo as they call it but the Doctors basically said there’s nothing much they can do about it, they did send me for tests to eliminate other causes and they all came back as negative, Doctors are no longer interested.

As a rule I do not make a fuss regarding my MS as I understand I drew the short straw and so deal with it in my own way but my wife and family say I should make more of a fuss with the medical profession and get the help I need, my response is ” why bother, nothing they can do about it”.

At this point I should say that when I was first diagnosed they did try a couple of various pills which either did nothing worthwhile or made me feel worse in other ways.
Currently I take naproxen as and when needed for the pain but nothing else.

I do feel let down by the medical profession but at the same time I don’t want to waste anyone’s time over something that can’t be helped.
My MS nurse says I should report my relapses so it can be logged to track my problems but I see no reason to dwell on it if nothing can be done so I just try to get on as best as I can. I suppose it does suggest to them I have no problems as I don’t run to them every time things go wrong.
On the other hand there’s nothing worse then dragging myself to the Doctors just to be told ” nothing we can do” .

Over to you, what do you do ?

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Anonymous
1 year ago

Report it so that it is on record. Email works best for me, I can write one email, l copy it to both GP and Nurse, and they can send it on to neuro if they think he needs to know. Not all relapses show on an MRI.

Agree though, its quite disheartening to go in person. The best that can happen is commiseration, the worst is that they start saying you are stressed, or have overdone it (which feels like I am being told it is my fault)

Although, of course, it is a good idea to go to get your urine checked in case you do have an infection that it causing a flare. That they can treat with antibiotics.


cameron
1 year ago

Sorry to say that it sounds as if your medical support/management is a dud. Who on your neuro team has given you the impression that it’s OK to ignore relapses? Are you not on a DMT and if not, is there a reason? Some people take the decision not to take treatment, others (judging from posts here) are not given the full picture of why they’re needed and what their choices are. Is this you? Relapse avoidance plus regular MRIs to find out if treatment is working or should be changed are widely accepted as the basis of MS management. Even if you’re now SPMS, if you’re having relapses there are DMDs that can be prescribed. Far from wasting anyone’s time, regular contact with the nurses and neuro could prevent more serious interventions down the line. And as for the GP, perhaps s/he is a dud, too. He or she SHOULD take you seriously and if s/he doesn’t, it’s time to change practices. Your wife and family are dead right! xx


sandwich
1 year ago

Agree with @cameron on all counts. Swap this doc for another one ASAP.


sandwich
1 year ago

Just seen you have RRMS and are on no treatment. If this is your choice fine but if not I’d be screaming from the rooftops. You need to stop thinking about it as if your making a fuss; this is your health, your life. If you’re worried about getting your point across take someone with you. Voiceability is an independent advocacy service in your area. http://www.voiceability.org/services/cambridgeshire-and-peterborough/face-to-face-advocacy/community-advocacy/

Healthwatch are good http://www.healthwatchpeterborough.co.uk/


xeno
1 year ago

Hi all, Thanks for your replies, much appreciated 🙂

Teal, never thought to use email to inform anybody so thanks for that, I have just emailed my MS nurse of my current situation..fingers crossed.

Cameron, nobody has told me to ignore relapses, it’s just that when I was first diagnosed I did report to my GP but it became apparent quite quickly they were not interested and I felt like I was just moaning and wasting time. I was told to grieve my loss and get on with it. My bad I guess.

I have had quite a few relapses and just ignore it as best I can but this current episode has left me wondering what to do as I feel it’s a bad one. To be honest nobody around me seems to be interested because I’m known to just walk it off and carry on, as we know it’s not always that simple.
My wife comes from a family of hypochondriacs so therefore if you don’t go to the Doc’s your not ill ?

As for treatments they tried me on gabapentin, pregabalin and amitriptyline for pain management but they just left me feeling like a zombie or did nothing that really helped in the doses they gave me.
Ended up on codine that blocked me up so now on naproxen, other than that nothing else has been offered.

Thanks for the links sandwich I’ll check them out shortly.


sandwich
1 year ago

Those treatments you list are not disease modification drugs (DMDs)so they will not slow your MS down or reduce your chance of relapses. Please do report any relapses or symptoms to your MS Nurse or neuro as they are better placed to act than your GP. This link talks about DMDs, what they are and what they do.
https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/disease-modifying-drugs-ms-decisions/disease-modifying

Is your neuro an MS Specialist?
Do you have regular MRI’s?

I’m shocked you seem to have had such little guidance and gobsmacked no one has talked to you about DMT’s.


mmhhpp
1 year ago

i agree there is not much the can do. I also suffer relapses in silence i don’t like going there if they do not have a solution. they only thing they can do is steroids.

It is important to document relapses officially and i tell you why. Recently i wanted to join the stem cell trial in the UK and one of the conditions was having had relapses treated with steroids…… how unfear that is!! There are people that can cope with a lot and still not have steroids and some who takes them immediatelly….. anyway i could not enter for other reasons but i think it is good to document them just in case something appears in the future and they set up number of relapses as an entry point….

I agree if you are rrms i would push for being on a treatment (unless you are one of those who believes in not taking anything) push hard, you should be entitled!!!

Take care x


cameron
1 year ago

Like @sandwich, I’m shocked – and equally amazed that you don’t appear to be aware of what you’re missing out on. The right DMD can stop relapses and slow progression but the drugs you’re on are only for symptom relief. Some neuros are already calling the hardline DMDs an MS cure. Once you’re on a DMD, you get regular monitoring and attention – something else you’re clearly missing out on. There are a lot of theories about MS but the one thing that most parties agree about is: UNTREATED MS GETS WORSE. Time to face reality? Do hope you can. x


mermaidia11
1 year ago

Time to face reality?! I think this dude is facing reality and that reality is that general practitioners are not specialists in Multiple Sclerosis.

In the UK,Trying to get an appointment with the neurologist or a telephone consultation with M&S nurse is a bit similar to trying to have a conference call with God.

. I don’t know whether you dudes are American or not, but in this country I can tell you that you have to argue with a narky uninterested receptionist first thing in the morning to secure a appointment with a little-known GP. Going to see the same GP is a thing of the past in this country. There is no continuity of care. There is no good drugs to treat us with from a GP.

Disease DMT? I think you are all being a bit patronising and presumptuous to be honest.
Again, I don’t know how it is in America, but in this country, we ( ok
I) take a slightly more stoical approach.
That is, that DMD May well stave off progression of the disease – but I don’t know of anyone who doesn’t put their body through its paces by taking them. Never mind the weight in between, having nightmares about needles and nasty rashes

This guy feels like cat vomit now and is just looking for some release. My advice mate? (well you did ask)

Take painkillers, rest a lot, watch some funny TV, listen to your favourite music,
Spend quality time with your lovely family, love your cellmate/soul mate and leave a message with the M&S nurse.

Don’t expect to get a miracle joke that will make you feel better
. You do eventually realise that that is down to you. Meditation may be able to accelerate a bit of healing and peace.
And hopefully you will feel the love of us all who had sympathy for you when we read your post and this will make you feel a smidgen better.

feel your pain bro, as we all do. Sending much love for a speedy recovery

I have no fear that someone will entirely disagree with my advice – (but I am still entitled to my opinion –I had relapsing remitting MS for 15 years. It does what it says on the tin – it is chronic, in curable and progressive. Show me compelling evidence that these expensive toxic drugs peddled by career neurologists, Actually slowdown what is essentially an incurable disease?

Anyone?

Just like karma,it’s gonna get ya. – so make the most of every day between now and then.

The Medical profession don’t have a magic wands – but you will find one within you if you dig deep enough

. I’ll shut up, I am very angry and very tired
.
Big loves from Liverpool mate
let us know how you get on lovely x.


mermaidia11
1 year ago

A miracle drug/ ‘cure, not joke lol
Typing a la pirate


potter
1 year ago

Speaking as a American it is not a walk in the park to get a referral to a neuro and then you have to wait months to get in to see them. It took me ten years to get a referral to see a neuro my GP wouldn’t do it, he kept telling me I didn’t have MS. He only gave me the referral my insurance company needed because he thought I had hurt the nerves in my elbow. The neuro ask me a few questions but immediately said he was testing me for MS. It seems to me that England has a lot more MS groups, meetings and hospitals than I have available. The nearest MS neuro is 200miles from me and the local group is 300 miles. You can’t afford DMT unless you have really good insurance that you pay for. My husband wants to retire but we don’t know if we can afford my Tecfidera. From what we can tell it is going to cost me $1000 per month after purchasing extra insurance and a prescription plan. Three years ago when I started Tecfidera it was $25,000 a year it is now $85,000. I have been on DMT’s since I was diagnosed and no relapses in nine years. I had two aunts who died of MS, they had it before there was any treatment. I would try any DMT to slow down this disease. I’m not sure who Mermaid is really angry at but this info should help her understand what is going on in America at this moment. Trump says he is going to change the medical system so we are waiting for the Merry-go-round to stop. Potter


cameron
1 year ago

Well, @mermaidia11, I’m really sorry that you are obviously at the rough end of the NHS. I (and I think @sandwich) are Brits and I have received excellent care – although not from day 1. My initial referral was to a local neuro who was horrible and hopeless. My GP was appalled at his manner and casual attitude and referred me for a second opinion to the National Hospital in London. From then on in, I can honestly say I have had the best care going. Specialist clinics (physio, continence, pain, relapse investigation), an MS specialist consultant, a 5-day a week 9.00-1.00 phone service to the nurse team (who talk to you with all your medical details up on their screens, so it’s a real consultation), annual MRIs. My GP is excellent, too, happy to prescribe anything/test for anything following a letter from the neuro. But I have to play my part – going to London is not in the least convenient – a three-hour journey for me on a peak time day return ticket so very expensive – as is the physio I need. To deal with it I’ve had to prioritise MS expenses over everything else – that has meant some hard decisions. I know I’m very fortunate and I don’t underestimate the problems of the NHS generally, but there are fantastic medics out there…. but I agree, they may take some finding.


Anonymous
1 year ago

Here in Sheffield UK – I have a great team but they have a huge case load, the consultants prioritise by scale of relapse, but the MS nurses are spot on & readily available they’ve save my life on occassion (litterally)
looking at the list of symptoms you’ve got in this attack – even I’d do something about this one even if it’s just to speed up recovery – perhaps call the MS nurse so she can set the wheels in motion

TTFN


vicy
1 year ago

I often have ‘telephone’ appointments with my gp.
I had to go through esa a while ago, & I rang the gp & said there’s lots of things going on that I haven’t bothered you with because I know you can’t do anything about my tremor, my balance etc. She said if she was asked about anything that she was unsure about then she’d ring me before filling in a form to say I hadn’t got whatever. She’s a very well behaved gp!


cocofloyd1
1 year ago

Hey I feel the same way with gps responses, so I usually suffer in silence.( I too have tried neuro painkillers and don’t rate them). However just before Christmas I was really bad and tried contacting ms nurse by phone couldn’t get in touch I then emailed explaining relapse I’m still waiting on a response! So I searched online for my neurologist email, found it and explained to him and he has replied promptly saying he’s arranged another MRI (with contrast) to see what’s going on. I was scared to do this although it’s our health/wellbeing that’s suffering so why wait and jump through all the hoops as your right g.ps have very little knowledge on ms and ms nurse in my experience is just to busy to respond. You could try that too or phone neurologist receptionist although I’ve found them to be frosty too!
Hope you feel better soon.


sandwich
1 year ago

I’m a Brit. It took a fair bit of time to find the “right team” but I found what I needed in the end.
Each to their own. The main thing is to know what your options are. For people with RRMS there are several to consider and I think we are quite fortunate in that respect. The treatment ethos is to treat these days and to treat early.
@cocofloyd1 -Good for you. I’ve done that before, googled my neuro and emailed him directly. If one avenue draws a blank I always find another.


lucyh
1 year ago

Dear @sandwich and @cameron, I’m sort of with @mermaidia11 on this one and @xeno too (although I’d love to change/things to change for the better!)…although I think emails to your MS nurse are a great idea (otherwise it can feel like we are being kept in a holding pattern of appts and meetings and the years simply pass by); I have not been offered DMDs so far for my MS and my last appt and follow-up letter with the neuro clearly indicated that this was not going to change (despite my telling her that so many PwMS had told me to get on to a DMD asap; indeed a neurologist in London said to me: if it’s getting worse you need to be on something). Even with the new(-er) spinal lesions it seems there will be no treatment offered, so I have no way of knowing how to spot a relapse, it is just varying degrees of feeling ‘a bit rubbish’.

I was told by a neuro at MS Life that I am entitled to see any neurologist I want in the UK. Would you guys recommend seeing someone in London? I’m an hour on a train to King’s Cross, so could manage it. I’d be happy to have a private message from either of you, since we cannot mention individual neurologists via public messages (thanks :-))

My plan of action now is for hyperbaric oxygen treatment, perhaps some meditation, and stacks of green veg, fish for its Omega 3 content etc.

Take care all of you, lucyh xxx


cameron
1 year ago

Yes, message me if you need more specific info, but I’ve said above what the facilities are (National Hospital for Neurology and Neurosurgery). It wouldn’t matter which consultant you see because they are all part of the MS specialist team. I get the impression that they’re all involved in MS research, too. My initial consultation was a private one and I was admitted for five days to get a diagnosis, but at that point my consultant switched me to his NHS list. If you go privately, you can’t access the support services or the NHS drugs. But I know you can transfer directly from one NHS Trust to another – it’s a right to be treated at the hospital of your choosing. If you do decide to move, you get the GP to put it in motion. I also know that it’s straightforward to change GP practices (well, it WAS – maybe all the cuts are changing this!). Best of luck with this. It really is unacceptable that you have not been offered treatment.


sandwich
1 year ago

I’m in the North @lucyh so unable to help I’m afraid.

Key documents which may be of general help are:

NICE standards and guidance in managing MS.
https://www.nice.org.uk/guidance/conditions-and-diseases/neurological-conditions/multiple-sclerosis

ABN Guidelines – guidance for prescribing DMTS.
http://pn.bmj.com/content/15/4/273.full

NHS Choices framework
https://www.gov.uk/government/publications/the-nhs-choice-framework/the-nhs-choice-framework-what-choices-are-available-to-me-in-the-nhs


xeno
1 year ago

Hi all again 🙂
Great to see so much support with all you responses so a huge thank you for that.

Thanks to teals suggestion, I did email my MS nurse regarding this relapse and she did indeed ring me back a day or two later 🙂 . Unfortunately it seems there is nothing they can give me now to help at the moment other than steroids which probably won’t help as they need to be started pretty much as the symptoms start, also they are more for physical problems rather than sensory issues.

The positive side of things is that she did speak with my neurologist who has asked for me to get another MRI and an update appointment with him as matter of routine seeing as it’s been 5+ years since I last saw him.

I should say that my current MS nurse replaces one I previously saw who, in my opinion, was less than rubbish and seemed to have no genuine interest in listening let alone helping. Hence my reluctance to bother anybody with my so called minor issues ?

So it seems it’s worth skipping the GP and going straight to the top.

Currently still numb and miserable but with a positive outlook ?


sandwich
1 year ago

Great news @xeno

5 years without seeing your neuro is very poor in my opinion. Your new nurse sounds on the ball.


lucyh
1 year ago

Hello again @cameron and @sandwich, thanks to both of you 🙂

@xeno, glad you’ve got the ball rolling, best, lucyh
PS I did change GP practice a few years ago…I’ve got a good GP now

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