Forum

hello.... another new to limbo land

Hello everyone.

I have been lurking and reading for a while but have finally decided to get my fingers busy on the keyboard and stop just looking.

I dont have any diagnosis but like many others a collection of “maladays” that mostly can be attributed to other causes but together might just be MS if everything else is not “sticking”

For several years I have had periodic episodes of that fatigue where getting about is like wading through treacle and ever getting started is a huge mental effort … given I am normally quite an energetic person and enjoy ( even if I am not good at them) sports. I had had depression and at first it was attriuted to that… then when that was past it well, had to be due to the menopause / thyroid etc … even when thyroid ruled out and the “menopause” becoming a never ending saga that is now ended ! Its the suddeness of onset / “recovery” and intermittant nature that makes me wonder at other causes.

Brain fog… forgetting the names of common things or losing track of what I am saying … is increasing this year to not being able to work things out as quick as I used to,simple mental arithmetic now sometimes stumps me gggrrrrr.

Then the cramps… in one leg last year, almost every night and sometimes in the days … lasted a few months … toe up at angle of 90 degrees …ouch . (… as well as a feeling like someone pouring ice cold water down my veins …eeeek … not as same time as cramps thank goodness !). They have just started up again last week as well as in the other leg a “tension” down the inner leg which causes my foot to turn in so I am kinda “pigeon toed” … I am also haveing periodic balance problems, almost falling over

I also last couple years had urge incontinence that seemed to respond to medication… but which in the last few weeks returned despite still being on medication Just been back to do to have change in medication … here’s hoping it works

and last but not least… and the actual reason I went to the doc … was vision problems. At first thought it was just my existing eye condition changing / glasses needed changing … then new glasses not good… but the intermittant blurriness (Its also occasionally double vision) persisted and optician says he cannot see any occular reason for it and suspects systemic reason…

he sent me to GP.

I might end up not being eligible to join this club … but I hope that I can make use of the advice, experience and support here while I find out .

Thanks for the forum… its through places like this that people can come and get support while “in the process”

Hi tazz and welcome,

Am sorry to hear that you are suffering , you say you’ve been to your gp and the opticians. Has the gp referred you at all to a neuro or opthamologist, it may be a good idea if he did give you a referral just to eliminate any problems, or indeed find what is causing your problems. Wishing you well.

Janet

x

Hello and welcome :slight_smile:

It seems eminently sensible to get properly checked out by a neuro - it’s quite common for one thing to underlie various things after all. What it might prove to be is difficult to say as there are so many possibilities, some of which are relatively easy to treat (e.g. vitamin deficiencies), but it’s definitely best to see an expert. Do ask your GP for a thorough battery of blood tests and for a referral to ophthalmology too - may as well get the ball rolling asap, and neuro appointments tend not to be very quick in arriving :frowning:

Karen x

oh bother… just lost a reply I typed to this earlier … did not realise… must have not pressed the right button

Thanks for the replies, much appreciated.

I have had a few tests already this year … was tested for diabetes ( am glucose intolerant) and doc decided do an MOT as well/… did thyroid, kidney function, cholesterol and liver function. All ok. Rules some other possible causes for symptoms out . He has doen another blood test to check for imflammation and will consult with a colleague he says.

He is generally a good GP but does have a ( self confessed) tendency to sometimes leave things a bit to see if they resolve on their own !

I am kinda experienced with the opthalmology side of things as I had , for some years, a rather “difficult to diagnose” problem with my eyes that local hospitals couldnt get to the bottom of… ended up in Moorfields in London and usually get loads students “coming in for a look” … not really lloking forward to doing all that stuff again. The condition has thankfully remained stable for many years and my optician has kept an eye on ot for me … knows my eyes well !!!

Its good to feel that there are people around that will hand hold and give advice while we go through this period of uncertainty … thank you.

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.

Hello :slight_smile:

I just wanted to say that it’s best to start a new thread so everyone sees your post.

Cocodamol isn’t very effective for neuropathic stuff. If you are going to have to wait a while to see the neuro, maybe ask your GP for something like amitriptyline or gabapentin to try?

I hope the results are in soon!

Karen x

Thanks, Karen. I realised my mistake after posting, but couldn’t remove it. It’s my first time writing in a forum, so good to have helpful advice. Thanks for caring to help me. Ronni x

Hi Ronnie, just wanted to say hi and welcome you to the forum.

I was a limbo lander for a while, and PPMS was highly suspected.

It is the more common type for the 40+ group…but not absolutely. I am 60 and my mobility problems began when I was 45.

I was diagnosed with 95% PPMS for 7 years.

Been tossed from neuro to neuro and now am told its defo not MS.

I have spastic paraparesis/cause unknown.

No cure, no treatment. Been a full time wheelie for 9 years now. Upper body is good, apart from a deaf right ear.

luv Pollx

First, I must apologise to Tazz for posting on her thread; I now know how to do the right thing and start my own thread - thanks to Karen for the heads up.

Thanks to all of those who replied, though. It means a lot to be made so welcome.

Ronni xxxxxxx