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Oops

[SURVEY] Things they don't tell you that you need to know.

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Oops

I thought I'd start a thread for all those things that we've had to learn by experience, to help those just being diagnosed. There's loads of info out there about the disease and symptoms themselves, but many of the "side issues" get missed until it's too late and they've reared their ugly heads. Perhaps if we make a list we can save others the grief!

 

I'll set the ball rolling with:

 

1. Teeth and gums.

 

I avoided the dentist for years through fear, and by the time I finally got it together to go, I found I had chronic periodontal (gum and jawbone) disease. Whilst this hasn't been helped by smoking, I've since become aware that nearly everyone I know who has had MS for a while has either crumbling teeth or rotten gums, or even both.

 

I've had to see my dentist twice over my week off work this week after a terrified Great Dane pup (I work in breed rescue in my spare time) managed to clout my already shaky front teeth, nigh on knocking one out and cracking the other. This led to an infection (we'll move onto those in a minute), and we're now fighting to try and save the teeth.

 

Obviously most of you don't run around after Great Danes as a hobby (and believe me, even an 8 month old Dane can cause damage, being the size of a large Labrador), but in the course of the aftermath I got talking to my dentist and his nurse about why there should be a link to MS and dodgy gnashers.

 

He said he'd noticed the same, and that all his MS patients in this boat have the same problem - we clamp our jaws shut or grind our teeth at night involuntarily. That makes sense because I know I do it, I woke up just this morning clamped solid with a spasm down one side of my face!

Anyhow, that results in one of two things happening. Those people with poor teeth but good structure behind them end up with crumbling enamel and the problems that brings. Those of us with shit hot teeth (like me, not a filling in my head) but weak gums will find that the pressure wiggles their teeth about, encouraging gum disease, and the whole cycle starts from that angle instead. Obviously any difficulties maintaining scrupulous dental hygiene - so people like me with tremors who can't floss, for example, or neuralgias in their face which makes proper brushing unbearable some days, which is me again - will simply compound things.

 

So what can we do about all this? Obviously it's a bit late for some of us, but even then you need to bite the bullet, get past the fear, and find a really GOOD dentist who's MS aware and can work with you. Explain the concern, and get him or her to keep a really close eye on the wear to your teeth and let you know as SOON as there is any sign of grinding or clamping - remember, you won't know to start with. Then get him to make you a soft splint to wear at night to avoid as much damage as possible - mine's doing that for me as soon as we know whether my front teeth can be saved or not. Also, get your normal cleaning done every 3 months instead of every 6, to keep your mouth as healthy as possible and give it every chance of coping.

 

I'm very lucky, my dentist works with my MS and the pain it causes me in my face, and keeps a very tight watch on infection - he even sends me away with an emergency supply of antibiotics to keep in the lorry for when I'm away and an infection flares but I can't get straight back to see him. I'll happily recommend to anyone else on Teesside, just drop me a PM.

 

I know going to the dentist isn't nice, but trust me, trying to sort the mess out retrospectively is agony!

 

2. Infections.

 

Following on from the above, whilst we all pretty much know that UTIs and chest infections can be a real cause of symptom flare in MS - for Relapsers and Progressives alike -don't forget that ALL infections have the same effect. They raise your body temperature, drain your energy, and make your MS act up really quite suddenly. This is particularly important for us Progressives to remember - we know we don't relapse, so if we suddenly wake up feeling like hell the chances are that's what's going on.

 

A perfect illustration of this has been me this week. Teeth got "dogged" on Good Friday, by Tuesday my MS was flaring so I knew there was an infection. Started antibiotics that day, felt better for a bit, but woke up this morning (Friday) feeling dire again, and the dentist confirmed the infection had flared again. Antibiotic dose raised, and by this afternoon things are beginning to settle. It really can have that sudden an effect!

 

On the plus side, I know my MS welll enough now that IT tends to tell me when I'm ill rather than the other way around, so I'm able to get infections stomped on much earlier (hence my fab dentist sending me away with spare antibiotics). I've been known to get "that" feeling at a weekend, where I just know a cough has turned into an infection, and have seen the out of hours service (doctors or dental) to get drugs ASAP. Make sure you TELL them you have MS andthe infection is causing a flare which could result in permanent damage if not jumped on quick. DON'T allow them to fob you off, make it clear that if they get it wrong, you could end up with progression that can't be reversed. Ok, so some viral infections can't be treated with antibiotics, but I have all my primary care types - GPs, nurses, and dentist - trained now to understand that it's not worth "watch and wait", and they just give me the damn meds.

 

Again, given time, you'll learn the different ways that viral and bacterial infections effect you, so you'll be able to tell the difference and know when to get help, but you can only learn this through over-careful trial and error. Even I don't always get it right straight away (as Cara will tell you,having been privy to the "3 weeks with pneumonia and nearly ended up in hospital" fiasco, through Facebook last November...Ahem...), but it's all part of educating ourselves about our own unique brand of this disease, and vital in making our lives as easy to cope with as possible. And that, I think at least, is half the battle. :doomed:

 

Ok, someone else's turn.... :huladancer::huladancer::huladancer:

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Apologies in advance if I post then vanish for a bit - I work away from home and will be back at the weekend!!!

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cyprus_dave

Teeth


Dave

 

"There is no pleasure in having nothing to do; the fun is in having lots to do and not doing it."

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Oops
Gassing up

Apologies in advance if I post then vanish for a bit - I work away from home and will be back at the weekend!!!

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lisalisa

He said he'd noticed the same, and that all his MS patients in this boat have the same problem - we clamp our jaws shut or grind our teeth at night involuntarily.

 

Thats really interesting, months before i started getting any neuro symptoms my dentist said my jaw was clicky. Sometimes i wake up in the night with my jaws clamped shut so hard, i cant open my mouth. I have also bitten my tongue and the side of my mouth in the night. I often have aching / numbness in my jaw and face when i get up in morning.

 

I havnt been diagnosed with anything yet... so dont know if my probs are due to MS.

 

Thanks for the post, very informative.

 

Lisa x

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cyprus_dave
What was the solution for you, Dave?

 

My GP prescribed me Omeprazole 20mg one a day

 

It works fantastic.


Dave

 

"There is no pleasure in having nothing to do; the fun is in having lots to do and not doing it."

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ptlike

Hi Oops

 

I didnt know all that but have had problem with tooth ache for ages which a higher dose of gabapentin seems to be working.

 

Thanks for info

 

Peter

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madhouse

My wife seems to lack the ability to acknowledge pain , for example when she sits down and does the ironing she will quite often burn herself with the iron and not feel it she has scars down the inside of her arm from burn marks , but she insists on doing the ironing (I have offered) as she still wants to try and do things . I do all the cooking because I don't think its safe for her to do it anyway , one of the hardest things for me is getting a balance of her doing things so she still feels valued and making a contrabution to the family but keeping her safe and stoping her accidently braking things .

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Badger

Another tooth grinder here!! :hearts_circle:

 

Mine hasn't been too bad recently, but I used to regularly wake my OH up with the noise! I do often have a sore head/jaw though from clenching the muscles...

 

Is there any research into a correllation between teeth problems/grinding and MS? It would be lovely if they gave us free dental treatment... I am getting a bit annoyed with accruing loads of extra expenses to deal with this condition, whilst earning less and less money!!

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Crappy
Marina
nearly everyone I know who has had MS for a while has either crumbling teeth or rotten gums, or even both.

Very good topic and well written, Oops! So much so, that I will pin it :hearts_circle:

 

Re: 1. Teeth:

 

Crumbling teeth, that's me, although I have good gums. Mine go way back, to when my wisdom teeth crumbled as if they were shortcake; this was when I was about 15, before I even had glandular fever or any other symptoms. In my 20s or thereabouts, I had tiny decays at the gum edges of my teeth and had to have something like 26 tiny fillings for them (all under anaesthetic or it would have taken a year, LOL).

 

These past few years, it got worse. I was going to the dentist twice a week :dunno: to get teeth filled, except that the dentist kept putting temporary fillings with the intention of properly filling them later. In the end, I ended up with worse teeth than when I first went to see him. He seemed to know about MS, but I got so fed up with my teeth getting worse and his procrastinating on what to do with them, that I changed dentist. I purposely picked one who did gas (as I HATE dentists :no2: and as I knew it would be easier and quicker all round for the dentist to work onme with gas rather than my squirming in the chair for weeks on end), and ended up having to have 21 crowns...!!! :wtf:

 

New dentist said that all it would have taken old dentist to do was to invesitgate each "quadrangle" one at a time instead of faffing about with little fillings here and there. I'm not sure how aware of MS she is though, as she seems more concerned about a problem with her arm (preferring to have her patients as close to totally flat on the chair as possible) than about my feeling terribly uncomfortable lying totally flat as it makes me gag as well as affecting my lumbar back problems, but I need the gas!

 

This has cost me a BOMB as stupid Denplan (dental insurance) won't let one change dentist unless the old dentist finishes off all work and declares you "dentally fit". Well.... given that he'd made me dentally more "unfit" than I was when I first saw him, that was impossible, so I've had fork out a fortune for all this work with the newer dentist. I've still got some more work to be done. I keep threatening to myself to go to a solicitor about it as I feel the old dentist was negligent, but try getting anyone in the medical profession to say a bad word about each other (hypocratic oath and all that) = fat chance.

 

I've also got a very problematic tooth that hurts all the time. It's been like that for at least 3 if not more years. Old dentist pulled the tooth next to it, as we thought that was the painful tooth and as the root was apparently fractured. He said he could replace it with an implant but forgot to tell me that it would cost


Marina

(belated DX in June '05, SPMS)

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Crappy
Marina
Cold Feet

Marina

(belated DX in June '05, SPMS)

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Crappy
Marina
My wife seems to lack the ability to acknowledge pain , for example when she sits down and does the ironing she will quite often burn herself with the iron and not feel it she has scars down the inside of her arm from burn marks , but she insists on doing the ironing (I have offered) as she still wants to try and do things . I do all the cooking because I don't think its safe for her to do it anyway , one of the hardest things for me is getting a balance of her doing things so she still feels valued and making a contrabution to the family but keeping her safe and stoping her accidently braking things .

 

5. Inability to feel hot things

This too is something some MSers get and is part of the neuropathic sensations, in this instance it's a loss of the sensation of heat. It can also happen with bath or shower water that's too hot. Safest thing is for such people not to do ironing or cooking, and to have a water thermometer for baths and showers.

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Marina

(belated DX in June '05, SPMS)

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lucky

I broke the corner off of my front tooth when I had a massive spasm.

 

I have got some Xylotene - It comes from the Waterfall D mannose site - - I think I got it free with the bladder control power so I must try it. The testimonials look good.

 

Xylotene looks like crystallised table sugar, and it actually tastes sweeter. You can put a spoonful in a drink, rinse your mouth with it, and then swallow it instead of spitting it out to gain all the benefits.

 

Unlike sucrose which, as everyone knows is damaging to health, teeth, and the waistline, Xylotene has multiple health benefits. Xylose is the first sugar to be attached in forming the glycoprotein chains involving chondroitin, a supplement that helps to prevent joint damage with regular use.

 

Xylitol (one of the ingredients of Xylotene), contributes to the ongoing process in our body of calcium remineralization.While it's not going to make your bad tooth grow back, or repair a crumpled spine, it can help prevent caries and other oral health problems as part of a regime of oral hygiene, and long-term use should help prevent the loss of calcium from other areas in the body.

 

In the intestines, it has been shown to facilitate the absorption of calcium through the gut wall and may play a role in the xylitol-associated prevention of calcium demineralisation. In other words, calcium absorption is enhanced, so your bone density and tooth health should improve.

 

So it appears to be an excellent mouthwash that you can swallow after rinsing. It non-chemically solves and prevents gum problems, and it is great for use before sex because of the way it attaches to Streptococcus - a common inhabitant of the mouth that can causes dental plaque and can cause real problems if it gets up the urethra. Both partners should mouthwash.

 

Read the testimonials and see what you think.

 


Edited by lucky

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Summer
My GP prescribed me Omeprazole 20mg one a day

 

It works fantastic.

 

I take that too, good innit lol

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Dianni

1 I'm absolutely terrified of dentists. I haven't been for erm 20 years :bday:

 

I've recently got as far as getting a friend to email me a list of local dentists with wheelchair access. It's been sitting in my In Box for 6 weeks. I keep looking at it and promising I'll ring them, but haven't yet!

 

Do dentists in UK still do general anaesthetics (sp)? If they do, that will be on my list of requirements too!

 

2 I have been really suffering with cold extremities this last few months. My feet have been so cold I've been in tears! (as well as 3 pairs of socks and a hot water bottle!) My nose is cold and feels 'buzzy' yet my hands are often so hot they are uncomfortable! :doomed:

 

4 The reason I am on here at 4am is I woke with acid reflux, ate 3 rennies and gave it up as a bad job, decided if I was going to be up feeling sick and in pain, I'd use the time productively! Can't bear Gaviscon but will mention my problem to the GP at my next appt! Thanks guys!

 

 

Hugs

Di

xxx

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kooky

Often wondered whether my second relapse last September was anything to do with a severe tooth infection, although it was on my list of symptoms that my GP and neuro saw, they didn't say anything.

Actually, I was given two lots of antibiotics at the time and one of them said something about contra indications with people who have MS....obviously as I'm not diagnosed then it wouldn't have been a problem for them to prescribe.....but got me wondering if any of you who are diagnosed are unable to take certain antibiotics?? ( I'm allergic to pennicillin)


Sick & tired of being sick & tired !!!!

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Crappy
Marina
Do dentists in UK still do general anaesthetics (sp)? If they do, that will be on my list of requirements too!

Very rarely if at all, I'm afraid! If they do, it tends not to be a full general anaesthetic but one where you're told you'll be "aware". I nearly fell over when I was told this when I had it for the expensive London root canal treatment. I had to have it as the area for injecting a local jab was exactly the point on my gum above the tooth where I had (still have, huh!) a lump of sorts and was far too painful to stick a needle into whilst awake and "aware"!!! I went into a bit of a panic attack when told I'd be "aware" as I thought "what's the point of that, then?!!". However, it did knock me out totally, which they said it probably would feel like that in all likelihood, as most people feel as if they've been knocked out. I just crossed my fingers and hoped I'd be one of the "most"...

 

Gas is also very difficult to find these days; I even thought they'd stopped it altogether but a very few dentists are using it again. It's also called " RA" these days, sort for "Relative Anaesthesia". It supposedly helps numb everything further, and it definitely makes one feel less likely to care about what's going on, and somehow makes time go by a lot faster. I was having 2 hr appts for the work on my teeth/crowns, all with gas or I'd go nuts in the chair for that long as well as be ever so stiff and in pain from the position, but it felt a lot quicker. Unless one's experienced it, it's a bit difficult to describe.

 

I believe, though, that both of these might only be available with private dentists, and then one has to hunt for the dentists willing to provide it...


Marina

(belated DX in June '05, SPMS)

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Dianni

Thanks hunni!

 

Hugs

Di

xxx

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Hezza
Again, given time, you'll learn the different ways that viral and bacterial infections effect you, so you'll be able to tell the difference and know when to get help, but you can only learn this through over-careful trial and error. Even I don't always get it right straight away (as Cara will tell you,having been privy to the "3 weeks with pneumonia and nearly ended up in hospital" fiasco, through Facebook last November...Ahem...), but it's all part of educating ourselves about our own unique brand of this disease, and vital in making our lives as easy to cope with as possible. And that, I think at least, is half the battle. :lol4:

 

Yep I remember this very well :lol4:

 

My GP prescribed me Omeprazole 20mg one a day

 

It works fantastic.

 

I take Lanzoprazole 30mg a day for the same thing. It's from the same drug "family" as Omeprazole


Life is short. Eat dessert first. Jacques Torres

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madderbat

Thank you so much for this topic, I thought it was just me who had mouth problems. So good to know it's not :)

 

I've had gingivitis for years and am convinced it's hormone related. I went through a phase where I knew when I was 'coming on' as my gums would erupt a week before. My teeth are mostly fillings at the back - grinding in my sleep didn't help them at all, but I don't think I do that much these days.

 

For the last few years I've been waiting for my teeth to fall out after I changed dentists and was told on the first visit 'Your teeth will fall out eventually' not - 'keep them cleaner', or anything else, but she was 6 months pregant at the time and I do get a much better response from her now, especially since my diagnosis - so there are some benefits then :hearts_circle:

 

I decided to start eating nuts and crunchy things now, while I still can, so have recently been adding fruit and nuts to my salad each day and thoroughly enjoying it (munch, munch). :sleep4:

One good thing is that salads and a small handful of fruit/nuts do not have too many calories, so I can chomp away without feeling guilty. I've started adding two teaspoons of hemp seed oil and a tsp of balsamic vinegar too which makes it very tasty. I take the third tsp of oil as is and find it very palatable.

 

This oil intake has also helped my digestive system which seemed to go awol three years ago and just 'seized up even more than ever. It had always been a bit 'slow' but I noticed food could take hours to get down my gullet, and didn't come out the other end with much enthusiasm either 010.gif

 

This year I've also really noticed how much having a cold affects me now - made everything else 100% worse for three weeks, and I've learnt not to agree to having a general anaesthetic unless it's life saving. The 'minor procedure' I had in February left me with constipation for two months and a whole barrage of aches/head buzzes and exhaustion. Never again!

 

I'm eating garlic every day and staying away from crowds, for their comfort and mine :rofl:


Never make the same mistake twice. There are so many new ones you can try a new one every day ;)

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madderbat

Forgot to say that I've also learnt to eat early - we have an evening meal at 6pm usually, and I've got myself a 'salad plate' halfway between a tea place and a dinner plate size, so am only having much smaller portions these days.

This has helped me avoid 'night cramps' which I was getting in my chest/stomach/ribs and belly, and is helping (I hope) to cut my calories and lose some weight. I piled on quite a lot when I was first 'struck' as it took a while to get used to 'being different' so I tried to carry on as before, if that makes sense.

 

Regards

jane :hearts_circle:


Never make the same mistake twice. There are so many new ones you can try a new one every day ;)

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Steve MS

Thanks for this article - very useful. I have noticed the enamel on my front teeth is looking odd and fragmented and my teeth don't feel quite as secure as they used to!

I had a check up today and took a print-out of this discussion with me and discussed with the dentist. He said he had seen these sort of things before with MS, but they tend to be a number of years after diagnosis. I was diagnosed nearly 5 years ago, but a lot of symptoms had been with me for years before that so who knows when it really started. He has made a note on my record to keep an eye on it and suggested a tooth guard if it gets worse and more regular check ups.

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Jackie01

Bit late to this sticky but it is relevant regarding bad teeth, bleeding gums etc.

 

I have recently been reading some research into possible links between MS and amalgam tooth fillings. There is a school of thought and possibly some evidence to show that the mercury in amalgam fillings eventually leaks into the system and poison the body causing MS.

 

This correlates with an interesting fact that MS is a new disease and was not reported before 200 years ago. It was alledgedly first reported only about 30 years after amalgam was first used by dentists. Even more interesting is that many years back British soldiers landed on the Faroh Islands and made a base there. Soon after that there was a massive influx of new cases of MS - the alledged link here is that the people of the islands were seeing British dentists from the army camp. The other possible indication is that MS appears to only affect those in developed countries - countries where amalgam is used. For example its extremely rare to find MS in Africa.

 

I wonder if people here can make a connection? How many fillings do you all have if any?

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Oops

None. Sorry. :squiffy:


Apologies in advance if I post then vanish for a bit - I work away from home and will be back at the weekend!!!

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Mimi

THANKS FOR THIS TOPIC OOPS.

 

I CAN CERTAINLY RELATE TO EVERYTHING YOU HAVE SAID, BUT DON'T YET HAVE A DIAGNOSES OF MS.

 

I GRIND MY TEETH DURING THE NIGHT AND FEEL MYSELF DOING THIS AS I'M WAKING UP. I'VE BITTEN MYSELF NUMEROUS TIMES ON THE SIDE OF MY MOUTH AND MORE RECENTLY, IN THE FOLD OF SKIN AT THE BASE OF THE TONGUE. YEARS AGO, A CHIROPRACTOR SAID THAT MY JAW WAS MISSALLIGNED (SPELLING) AND MY JAW CLICKED...

 

 

UTI'S - YEP, I HAVE THIS FEELING OF BURNING/BEING UNCOMFORTABLE, WHICH APPEARS TO BE HAPPENING EVERY COUPLE OF WEEKS. I NEED TO MENTION THIS TO MY DR! I REMEMBER LAST YEAR, I HAD TERRIBLE CHEST PAINS (TURNED OUT TO THE GER) AND ENDED UP IN A&E. AT THE TIME, I WAS GOING TO THE TOILET EVERY 20 MINUTES, AND HAD A LOT OF SPASTICITY IN MY LEGS, SO THIS WAS PROBABLY BROUGHT ON BY AN INFECTION!

 

GER - THIS TOO - SMALLER MEALS HELP ME TOO.

 

THANKS FOR THE POST.

 

REGARDS MIMI


PLEASE NOTE THAT I USE CAPITALS IN ORDER FOR ME TO READ WHAT I HAVE WRITTEN (THINGS HAVE A TENDENCY TO JUMP ALL OVER THE PAGE NOW) AND I'S NOT A SIGN THAT I'M BEING RUDE OR STATING A POINT. MANY THANKS FOR YOUR PATIENCE!

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so_sleepy

wow this thing about teeth and jaw clenching is so interesting. I'm still at the begining of my limbo land journey but it gives me one more thing to add to the list of things to tell the nuro. I always thought of my inability to relax my jaw and my knawing to be a bad habit. I just cant seem to relax my face sometimes. My jaw really start to ache. I dont have any problems with my teeth but I do grind them sometimes. I've never had a filling and then dentist put my bleeding gums down to plaque. I had a professional clean but they still bleed. The thing I do mostly is knawing on the insides of my cheeks or tounge instead. I have divits down the side of my tounge and all inside my mouth from the teeth clamping. I get ulcers and painfull swollen tounge but I still cant stop doing it. If I notice myslef doing it in the day time I blow my cheeks out to stop myself but at night I dont notice until the morning when I wake with a tounge full of thunder.

 

Never really thought about UTIs either. I used to get them often but havent had one in a long time. Last time I got one I was pregnant. I had a really bad one causing severe pain in my kidneys and went to casualty because I thought I was loosing the baby. They said the infection was tracking back to my kidneys and if I hadnt come in then I would have ended up with a kidney infection. I didnt know I had such a bad infection because it was the 1st sign I had. I dont even notice when I had a UTI usually as I get no symptoms other than needing to pee even more than I already do. If I am up 20 times in the night I know I have one. I rarely have any discomfort or burning but when I cant stay off of the loo and one sip on water goes right through me I go to the doc.

 

I dont get any indegestion or reflux. I had a rare moment a few months ago and thought it was odd because I am not prone to it. Nothing since then. I had it a lot when pregnant and I am very glad I dont get it when I am not!

 

Interesting about bugs and viruses, I always get things worse than everyone else. When we had norovirus I was down for the longest and everyone got a virus in april and lasted a day or two but me, I ended up being rushed to casualty delirious and so exhausted I could barely speak. Since that virus I have never really recovered. My baby didnt get it at all, Emily complained for about 5 minutes, my mum had it 2 days and my husband threw up once and had a temperature but that was it.


Last night a DJ saved my life.........

 

 

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      What medication are you all taking and for what symptoms? Are they actually working for you?   I am taking :   Baclofen = Spasms, I found they took a while to start working and i have had to have maximum dose to get any benifit out of them but yes they are helping me loads..   Deazepam= spasms and anxiety, I started on a high dose when all my symptoms started but ive managed to come off them and just take these when my symptoms flare up.. yes they do work but wouldnt want to become reliant on them..   Tramodol= for the pain, they work great for me as they are the only pain killer that actually work when pain gets really bad.   Antibiotics= perminant for bladder/kidney infections   Sleeping pills as required ....

      in A Survivor's Guide to Multiple Sclerosis

About Us

Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.

If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.

The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.


The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.
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