Hey Geoff, I am a Nanna of 5, LOL. And use Nordic Pole’s to help me get further when out walking, I love the velcro strap/half glove on them. I am lucky enough not to need them all the time. They attach via an easy to move clip and the poles are telescopic. I will be walking through Barley in Lancashire later with hubby and dogs. Its frosty and fresh up here this morning. Wishing everybody a nice day today.
Purpledot, I hope you are accepted early on, if not, just don’t give up.
Catherine xx
Thanks for that, Geoff (are you a real doctor??!!??)!
Your mobility issues sound a lot worse than mine, so I admire your positive attitude.
I know I am being very silly regarding this rollator thingy, and will probably end up using one. It was just a bit of a wake-up call for me, I think.
I will speak to the Physio etc on Tuesday.
Medio - I will be starting to fill in the forms soon, so only time will tell! Gulp!
Hi Purpledot
Yes, I am a real Doctor - I have a certificate that says I have been awarded a Doctoral Degree.
If you mean am I a medical doctor, then the answer is NO. You can see on my profile (click on the username).
Do note that a lot of GPs are now Doctors as well as doctors, in that their studies have included a substantial chunk of research.
Positive attitude? Well I reckon there are exactly two options - either you don’t give in, or you do. I think I am a lot better off than some folk who regularly post here, but it does get a touch hard at times.
I felt pretty much like you when the Physio suggested using one (rollators are for little old ladies) but the benefits did seem to make it look worth while. Time will tell! Just keep an open mind, that’s all.
Geoff
Well, I’m back there tomorrow so I will see how it goes, but I have to say I am slightly more open to persuasion on the old rollator front than I was a week ago!
Thanks to everyone for your lovely replies. I’ll let you know how things go. xx
Ok, so I had my second appointment today.
To cut a long story short, I saw a lovely physio who, in less than an hour, is almost certain she has identified what is causing my balance problems, and is just as certain that I do not have ME/CFS (a diagnosis I have been living with for 22 years!)
She has identified that there is a problem with the messages going from my eyes to my vestibular system in my inner ear, which in turn are therefore not sending the correct signals to my feet. She did lots of tests on my eyes and freaked out when she asked me to move them up and down! Apparently my right eye was doing some very weird things! In another test, it was my left eye that wasn’t behaving normally, so there is obviously a problem with both of them.
Anyway, she reckons she can cure it. She said it will take a long time and it will be very unpleasant for me, but she can cure it if I am willing to do everything she says, to the letter, however unpleasant it is. I told her to bring it on!
I breifly mentioned my other symptoms, and she said that there are obviously other things going on that I still need to pursue with the Neurologists, doctors etc and that she will just be concentrating on the balance issues.
I then saw a Nurse who said she wanted to repeat my laying down then standing up BP, as last week it dropped when I stood up. It did exactly the same today, and took ages to come back up again, so now they reckon there is a problem with my autonomic system. She says she needs to speak to some doctors and speak to me again next week.
So, there we are! Not out of the woods yet, but if I can just sort out the balance I will be so happy! I do feel quite frustrated that I have lived with a probable mis-diagnosis for 22 years, but am now looking to the future rather than dwelling on a past I can’t change!
…and the moral of this story is “If you don’t feel comfortable with a diagnosis don’t just accept it. You know your body better than anyone and you know when things aren’t as you are being told. Never give up, and accept any help you are offered as you never know where it may lead.”
Oh wow! It sounds like you have finally found a group of people who are really taking the time to consider you individually. How fantastic! I wish you all the luck with the (horrid sounding) things you will have to do re your balance and hope it will get sorted in the end. Keep us updated.
Thanks Pud!
I am remaining a little sceptical so I don’t get my hopes up too much, but am also secretly optimistic!
I still have to pursue my other symptoms with Neurology, endocrinology etc, but if I could just sort out the balance I will get so much of my life back.
Am starting my first lot of horrible ‘tasks’ at home today, so wish me luck!!
I’ve just come back from a chiropractor as I am still waiting for my physio referral that I was promised in August and I was aching all over from my funny walking etc. Anyway he suggested a Pilates ball to sit on to help with my balance and posture problems. No idea if this will help or not but I will give it a go! Dare I ask what your horrid exercises are?
Yes Pud, I feel very lucky to have so many people suddenly ‘on my case’! I will be seeing an OT next week, too, so I think the walking-aid issue is going to rear its ugly head again. However, I feel more positive about using one now as there is more indication that it will only be a temporary measure.
The Pilates ball sounds interesting - I’d be really interested to hear how you get on with it.
The first lot of exercises are to do something to make my symptoms worse for a minute, then do whatever I normally do to make them subside back to how I was feeling before, and repeat this 3 times in succession, 3 times a day. In my case, she has decided on scrolling up and down a computer screen as it is this eye movement that was most significantly abnormal and I do admit to it making me feel worse.
I am supposed to keep scrolling for a minute or stop sooner if I need to. I haven’t managed a whole minute yet today, but that’s fine in these early stages. As she said, it’s going to be a very long haul!
I am a little concerned, however, as I had a horrible pain in my right eye when she was doing all her tests etc yesterday that lasted right up until I fell asleep in bed last night, and every time I do the exercises it comes back. It does say to stop doing them if they give you a headache, so I may ring her tomorrow just to check it’s ok to carry on with the eye pain. (She’s given me her number)
I really don’t want to be unable to do them as I’m now impatient to get things moving in the right direction, but don’t want to make anything worse by ignoring a significant symptom like eye pain.
I’ll let you know what happens…and good luck with the giant ball, Pud!! xx
How weird (the exercises that is)! I think you re right to check about the eye pain though. I’ve ordered the ball from Amazon 
I was also told to stand on one leg for minutes at a time to improve balance, preferably with my eyes closed. Well I tried last night with my eyes open and couldn’t even manage 15 seconds without toppling and that was with my arms flapping to balance me. It’s a work in progress!
Ok, went again today. Saw an OT who basically just asked me loads of questions, then saw Physio again, who did loads more assessments. She asked me about all my other symptoms apart from the balance issues, and so I told her everything. She immediately asked me if I felt worse in the heat and when I said yes she then asked when I was seeing the Neurologist. I am now slightly concerned she’s considering MS as a possibility, as she also kept mentioning the problems I have with my right leg and generally on my right side. The OT also asked when I was seeing the Neuro. I also had my laying down/standing up BP done again and it dropped drastically again when I stood up…so she told me to drink coffee or eat chocolate!! Apparently, caffeine helps! Have some more exercises to do, and have to rest more!
Hehe PD,
Sorry, I didn’t realise you had an ME/CFS dx (as did I for quite a few years).
Apparently autonomic dysfunction isn’t common in MS but it does happen, I was convinced that my ME dx was correct because of my inability to tolerate physical activity (and exercise is supposed to be beneficial for MS). I also have terrible problems with temperature control (too hot/too cold/night sweats) and I can’t remain vertical for long.
All I’ll say is listen to your body and don’t any more exercise than you feel you can cope with (I’m afraid I avoid my physio now as she’s an ‘exercise cures everything’ kinda gal ;-)).
Take care hun,
Mags xx
Thanks Mags
My Physio is actually being very cautious about giving me too much to do, and the exercises I am doing are more to re-train my brain to override the incorrect signals it is receiving, rather than particularly physical ones.
I have no idea what on earth’s going on with my body at the moment, but what she is saying regarding my balance is making some kind of sense, so I will go with it and see what happens. She’s the first person to ever even acknowledge there is a tangible reason for my balance problems, so I have to give it a go, as doing nothing sure as hell isn’t helping!!
Will let you know how things go!
Went again today…they have now told me that my balance issues are definitely neurological and not related to inner ear in any way. They also told me that, after last week when they asked me about all my other symptoms, they have been in contact with the Neurologist I am due to see for the first time in January to try and get my appointment brought forward as they think I should be seen earlier. They are waiting to hear back from the Neuro, who they say they will speak to and discuss my case with before he sees me. This kind of freaked me out a bit in one way as they think I should be seen quickly, but I also feel very grateful that they are on my case and are trying to do everything for me that they can.
The physio found more abnormal things this afternoon that she said are all neurological.
On a positive note, I am getting better at standing and sitting unaided without swaying and falling so dramatically!
Onwards and upwards!
Hope you get an appt soon even though it does make it seem scarier. Good to hear physio is helping to A
You got reinforcements!! Good for you, hope the appointment comes through soon. Take care of yourself xx
Thanks guys!