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I'm a new 'older' member, undiagnosed.

Hi, I’ve just joined, having been reading as a guest. I am 65 and am not yet diagnosed. My symptoms looking back began when I was 45; kept falling down with no warning, no trips or anything, just as though a switch had been turned off and I would only realise I’d fallen when I was on the ground on my butt! As I was then working very hard, I didn’t bother my GP with the prob, just lived with it.

I’ve had subsequent problems with double vision and pain and fuzziness in my brain, which I just put down to ‘senior’ moments

Recently, past 6 months, keep dropping things, began to feel as though I was wearing someone else’s legs or like a baby just learning to walk. Past 4 weeks been in tremendous pain in legs and back and trembling in legs. Also think I have the MS hug?, which was discussed in another thread. Also tingling in chin and groin. Went to GP ( at last) and he sent me to neuro spec. From there referred for EP tests; results are with specialsit, waiting for call-back to discuss results.

Feeling very much ‘in limbo’ taking co-codamol for pain (not a lot of relief from them)

All a bit scary.

Thanks for this forum; it’s comforting, as I am confused by what is happening to me…

Welcome, and I hope you get some answers soon from your docs. If your pain is neuropathic pain of the sort that MSers tend to get, conventional painkillers are pretty rubbish, even if they are strong ones, but there are other drugs that work much better for this kind of problem so don’t despair. I hope you get to the bottom of what is the matter and get the support you need. It is awful, not knowing. Much better to know what you are dealing with. Good luck with it all. Alison x

Hello and welcome (again :-)) :slight_smile:

Just wanted to second Alison - do ask your GP for something better to help with your symptoms.

Hopefully it won’t be long before you get some answers, but if it’s been a while since you had the tests, you could always try phoning your neuro’s secretary to see if the results are in and how long it might be before you get them. Even if they won’t tell you anything, it might encourage them to get the letters out to you sooner :slight_smile:

Karen x

PS 65’s not old! :slight_smile:

Thanks, Karen, for your 2nd welcome.

I’ve rung the neuro’s secretary and she told me the results have arrived and neuro has dictated letters, but she can’t tell me what’s in it. :-(, so again I’ve just got to be patient and await his call to discuss results. You will know how frustrating THAT is…thanks for advice on meds. The co-codamol is pretty useless, in fact no better than ibuprfoen or paracetamol; all it does is give me constipation and I have quite enough problems on that score already

Now I must go to Tazz’s post and apologise for posting in her thread.

Ronni x

Hi Ronni and welcome…

There’s a few of us in same age-range… I’m 60 this year… but nowadays we are not that old… I live in sheltered where I am the ‘baby’!!!

Hope you get your results soon… and you get some proper med’s to help!

For the constipation, try golden linseeds… can buy in most supermarkets or health food shops. Sprinkle them on soup, salad or cereal & remember to drink lots of water (whether taking linseeds or not).

See you again soon,

Pat x

Hi Pat, thanks for the welcome.

How old were you when you got your diagnosis? I have found on looking back that I had symptoms for a long time and wonder if it’s more usual to be diagnosed earlier in life.

I’ll def try the golden linseeds; I love seeds and being veggie I wonder how I never tried them before. I use Fybogel as it is pure natural ingredients. I also enjoy water and drink lots.

I decided today to only take a co-codamol at bed-time, as the mild sedative effect may help me get a good night’s sleep and may also cut down my need for laxative. I find during the day the pain seems less extreme, probably because I can distract myself on PC. and at night seems the only thing on my mind is pain!

How nice to be the ‘baby’ in your sheltered housing; I am the matriarch in my family and it would be nice sometimes to be babied, though my children and husband are very supportive I have to say.

I look forward to chatting again.

Ronni x

Hi Ronni, I was 55 when dx 2008… but yes I had symptoms for years. Funny stuff that would come and go so I never bothered to see a GP.

By 2006 I was getting very severe fatigue, some cog-fog stuff & general periods of confusion, and then got shingles on face and head. I think I got them because I had been pushing myself through the fatigue for so long and finally my body said ‘enough is enough!’ and gave me something that stopped me in my tracks!

I was eventually dx with ppms. But don’t worry about what ‘type’ you are at this point… get the dx first.

I take Amitriptyline for nerve pain… and Gabapentin and Pregabalin are also good… much better than what you are taking. Ask GP to prescribe.

Glad your family are being supportive. Mine are too. Makes all the difference.

Take care and remember to rest as much a possible… it helps.

Pat x

Hi, from one older member to another.

I`ve been having MS like problems since I was 45 too. I am now 60.

For years they said I probably had PPMS, then for even more years they gave me a 95% dx of PPMS.

Last year MS was totally squashed in favour of;

idiopathic spastic papararesis.

posh name, innit!

luv Pollx

Hi Poll,

I read your earlier post and boy, what a nightmare you’ve been living these past years. But, yes, it is a posh name. I’ll bet you can have a good conversation when you throw that one in! I googled it and the symptons are pretty horrific aren’t they? How do you cope? Do you have family?

I just hope that when I next see neuro that he has a definite diagnosis. It would be even more limbo if he hasn’t a clue!

Hugs, Ronni x

[quote=ronnigee]

Hi Poll,

I read your earlier post and boy, what a nightmare you’ve been living these past years. But, yes, it is a posh name. I’ll bet you can have a good conversation when you throw that one in! I googled it and the symptons are pretty horrific aren’t they? How do you cope? Do you have family?

I just hope that when I next see neuro that he has a definite diagnosis. It would be even more limbo if he hasn’t a clue!

Hugs, Ronni x

Hi Ronni, yes I do have a family and if you read up on ISP, youll see it could mean a 50% chance they could develop it. Scares me stupid that Ive passed down a crippling condition. I actually apologised to them all! We dont know if my pre-decessors had it.

I cope the best I can. Hubby is my main carer. I have 3 others, who make such a difference to my difficult life. But hey…I may be broken, but I`m still here and enjoy life…most of the time.

luv Pollx

Hi Poll,

That’s the secret; to enjoy life whatever it throws at you; make the most of the good days and survive those that aren’t so good.

Glad to learn you have such a good support system in place. It can make all the difference in the world to know you’re not facing the battle alone.

It has certainly helped me enormously being on this forum, chatting to those such as you who’ve been through similar circs.

Take care,

Love Ronni x