Hi, it's only me from over the sea

[Jayneanne]

My name is Jayneanne and I live in Lanzarote. I am a Mum to 6 children (the youngest we adopted from Kenya) and I am probably one of the oldest here at 54 years old.

For some years now I have been experiencing a great number of classic MS symptoms and as I am of menopausal years I have ignored them all putting them down to the age factor..... however when I fell over making the bed a few weeks ago after being very unsteady on my feet for a while I thought it best to go to my doctor. Armed with a list, bearing in mind I have to explain in a mix of both English and Spanish, I visited my GP. When I mentioned my concerns she immediately said that as I had not lost my eyesight it couldnt possibly be MS. That was the beginning of my consultation. As she was more concerned about my vertigo and severe headaches, she gave me a fairly thorough examination and referred me to a neurologist ( I am still waiting for the appointment)

Can anyone tell me please.....Is this statement true?

If so then I shall unregister myself immediately.

It does appear that the symptoms are so similar to a multitude of disorders that I might be barking up the wrong tree, which has to be good news for me!

So fingers crossed and once again hello to you all

Best wishes

JA x

[Michelle]

Hi Jayneanne and Welcome to the forum

I wouldn't say that you have to lose your eyesight in order for you to be diagnosed with MS. However, quite a few Pwms have suffered from loss of vision ( ON).

Personally, I would not unregister from this g.p for making such a statement. G.P's are obviously not neurologists, and therefore are sometimes not up to speed with the world of MS. Sometimes this can be said of neuro's

The forum is packed with lots of info regarding MS and symptoms pertaining to the disease. Hopefully, you will find the info helpful and find the forum a place of support whislt you wait for a diagnosis.

Regards

Michelle

[Marina]

Hi Ja and welcome to our forum

 

SIX children? Goodness me, how do you cope? I don't even have one and I'm knackered... . I've always greatly admired mothers who additionally have kids (even more so, lots of kids!) as it requires such energy and you have to keep going for their sakes whatever your own condition might be.

 

Errrmmm... no, I'm afraid your GP is wrong in that respect. Nowhere does it state that one has to lose one's eyesight, or even have vision problems of any kind, for it to be MS.

 

Vision problems, or rather Optic Neuritis, is a common symptom but is certainly not essential for a diagnosis. It can often be the first symptom in younger people but not necessarily in older people. More here on diagnosis of MS and the criteria required for a DX (short for diagnosis) http://www.mssociety.org.uk/about_ms/first...gnosing_ms.html - the best link for it seems to be down at the moment, which is http://www.mult-sclerosis.org/diagnosingms.html

 

Having a referral to a neurologist is, however, a good thing as it may help eliminate the possibility of MS (and other conditions). As you say, the symptoms might be due to other conditions but still safest to check out everything.

 

What are your other symptoms?

 

It is kind of unsettling though, isn't it, when we have symptoms that might be MS or might be something else, and we don't know what it's due to...

 

Please feel free to ask away about anything else or any other concerns

[Jayneanne]

Hey Marina, less of the'older' lol!. I have no intentions of growing up for quite some time yet.

Thanks for the welcome I really do appreciate it even if I am here under false pretences.

Symptoms from the top,-

Aforementioned vertigo with accompanying nausea and headaches similar to migraine I suspect,

Blurry eyes which go into flickering spasms - I can still see though!

Trigeminal neuralgia which is almost constant but thankfully low key although it does worsen when I do

spasmodic choking episodes. normally in company, which causes the family to fall about laughing. Sometimes seems like my throat has shut down.

Vocabluary is another cause for laughter when I either cannot remember a) a key word in a sentence b) the sentence ending or c) I inadvertantly replace a word woth another which bares no resmblance to the intended one.

Dippy scatty dopey daft, I never fail to amuse those around me

Seems funny writing this today as I am having one of my stupendously good days, hence my enthusiasm here..........

Leaning( falling drunkenly to the left (I rarely drink as it doesnt really agree with me), Also actually falling down. I am very nervous now in the shower and dare not stand on one leg to wash my feet.

No knee reflexes and poor ankle reflexes

I ache from head to toe but in varying places on different days, which make me feel like a total hypochondriac. Right arm numbness and pins and needles

Left thumb only and all toe tips.

If I sit for any length of time, my bum and legs go completely numb and I need assistance to stand and then hobble off drunkenly.

I have difficulty also recognising hot from cold and have scalded myself in the shower on a few occasions

AND oh boy do I ever suffer with fatigue. I even wake up completely knackered and struggle through the day, going back to bed at 8 when I put our little one to bed.

Lost my train of thought as I just had a phone call

However I am sure that there are load of people far worse off then I am.....

Best wishes for now

Have to make supper

JA x

[Marina]

Hey Marina, less of the'older' lol!. I have no intentions of growing up for quite some time yet.

That makes two of us then, as I'm 52 but have always remained 24 at heart! Mind you, age does come into it with MS, as they say one develops MS up to the age of about 50. So, if one is over 50 and has a first attack, they're less likely to think it might be MS. That doesn't mean to say that one can't have had symptoms before the age of 50 of course. I was 2 months short of 50 when I got DX'd, but had had symptoms for years.

 

Whoooph, that's quite a list of symptoms and I can see why you might be wondering if it's MS. You have my total sympathy re the TN as I get it too and frequently. Ruddy nightmare, isn't it?!

 

Have you considered also seeing an ophthalmologist re the blurry vision? I did, before I got my DX, and he in turn referred me to an orthoptist (squint doc) to check for any eye muscle irregularities. She found my left eye wouldn't hold focus properly and that I had a slight double-vision because of it. There were a couple of other things but I forget what now. She ended up by saying that there was no obvious eye muscle cause for it and it could only originate from something in the brain. She prescribed a prism for my left eye to try to help stabilise the wonky muscle, and added that it might not help all the time but might be of some help, which it is.

 

I also referred for a VER (Visual Evoked Response aka Visual Evoked Potential) which is one of 3 tests they do for MS as it checks the optic nerve. The VER showed normal. But, my optician took a large digital photo of my eyeball where even I could clearly see the ON when he showed me where it was. My ophthalmologist then agreed that I probably did have a mild ON after all and it unusually just didn't show up on the VER.

 

Or, you might find that when you see the neuro, he'll refer you either to an ophthalmologist or for a VER.

 

I hope you enjoy your supper and bon appetit!

[Jayneanne]

Thanks for that info Marina. I had certainly intended to get an eye check, however, although I do speak Spanish, it is not good enough to expain all. It's possible I shall come over to England at some point next year so it might be better to get them checked out there.

I do think that I am not as badly effected as some with the TN as mine seems to be a constant ache that is very wearing. My Mum had it some years back after an attack of shingles, and she was in complete agony poor soul.

Many years ago I also had a bout of Bells Palsy and I wonder if there is any connection there as that effects the facial nerves, creating paralysis. I am left with one droopy eye which has never recovered (thank goodness I don't dribble though - only do that when I am sleeping lol

I shall keep in touch and let you all know any news. Tomorrow I go back for the blood results as the doctor wanted to rule out rheumatoid arthritis and a few other bits and bobs.

Best wishes

bye for now

JA x

[linds]

Hi Marina and Jaybenj,

This is the place to be for info - helped me no end.

You can't beat me for age 57 and had symtoms for years but only just Dx so you can be diagnosed at any age. Ja you didn't mention twitching muscles and heat . (Although you must be used to that in Lanzarote) heat I mean. I get numb bum but thought I might be getting lazy.

 

Any members over 57 - lets have a poll!! Linda

[Heste]

I just wanted to say thank you Ladies for making me feel so young.

 

Regards,

 

John (44 year old toddler)

[linds]

Ah thats good John. We will think of you as "young John" from now on then. Hence the chic

[Gaynor]

Hello,

 

A belated Welcome from me too Ja

 

I'm in Germany with parents living in mainland Spain...so I know the difficulty with language barriers! My Mum has learnt alot of Spanish and myself ooh a wee bit of Spanish, French and German but always muddling them all up when trying to think of the words - I feel 75 sometimes not 35!!

 

Well alot has been said to you already and I can't really expand on that - but suffice to say I'd keep on with the appointments if I were you and try to find out the reason for your many symptoms. May well be MS or a very similar condition.

 

I've had a pooey day today Felt dizzy and nauseous from the moment I woke up and gingerly crept round most of the morning. It did eventually improve.... but meeee no like horrid feeling .

I wanted to busy about today too but sadly it wasn't to be. I'll now have to face the hoards in town tomorrow instead if I'm feeling up to it and my body will allow me out!

 

Gaynor

[Jayneanne]

What a lovely welcome, thank you all.

Well I just got back from the doctors and, as I expected, my bloods were all fine and dandy. No rheumatoid issues, diabetes,no underactive thyroid (obviosly just fat!) even amazingly my cholesterol levels were fine, which I thought would be through the roof - have to find some more chocolate to celebrate

My GP said that the neuro appointments normally are though between 2 to 3 months and I have waited a month already so hopefully not much longer.

I only remembered afterwards when I was listing my symptoms that I had been leaving my worst one til last and then forgot it completely haha! Sure many of you can relate to that one....... Probably for the past couple of years I have been getting the most excruciating crushing pains in my back& chest that takes my breath away and can last for days. it was so bad that I thought I was having a heart attack and had an ECG done only to find that my heart is going great guns and if anything is on a bit of a go slow. I went back sometime later when i had another bout and we discussed the possibility of a breast reduction as she believed that might be the cause of the pain.

After researching MS it would appear that this is also a very typical symptom. I actually feel that if diagnosed I would almost be relieved as it would be an answer to a lot of my questions.

Thanks again for such a smashing welcome, and reassuring support

JA xx

[Shirl]

to you Jayneanne!

 

I think that you will get all the support and help you need here while you are finding out what is wrong with you.

 

And I now know that Marina and I are the same age! Two years younger than you Jayneanne.

 

[August 31st, 1955, Marina! And you?]

[linds]

Good to hear from all you fab fifties!! Am I still theoldest at 57 and a half

 

LINDA

[Marina]

[August 31st, 1955, Marina! And you?]

Suffice to say, Shirl, that we're both 1955 Virgos! I guess that explains a bit

[Marina]

The eldest member that I'm aware of is Ellie in her 70s, but she's not around these days.

[Marina]

Many years ago I also had a bout of Bells Palsy and I wonder if there is any connection there as that effects the facial nerves, creating paralysis.

Ahhhhh..... now.... shingles and Bells Palsy were my first symptoms (of big relapse) in 2003. Except that I was later told I had neither shingles nor Bells Palsy as the symptoms didn't really fit.

 

I first had the supposed shingles, then no sooner did it start to clear up that I had the facial thing. I just woke up one day and said, "Eep, the right side of my face feels funny...". I was in France at the time, and my mother said to phone and ask her dentist, so I did, and when I explained to him that I'd just had shingles, he said it was fairly typical to get Bells Palsy after shingles and that the way I described it to him made it sound like Bells Palsy.

 

For 3 months, my cheek and lip and inner cheek felt as if I'd just come from the dentist when a dental anaesthesia wears off. I couldn't taste stuff, and couldn't quite move my facial muscles on the right same as on the left. The eye droop was minimal and only one person thought they could just barely notice it.

 

So, in my case, neither were what we initially thought and both were MS sensory symptoms.

[Shirl]

And, Marina, I'm married to a 1944-vintage Virgo - they say you shouldn't, but I did!

[Shirl]

But more seriously, and to add to Jayneanne's original topic more sensibly, I have firmly believed that my maternal grandmother was an undiagnosed MSer. All the things supposedly wrong with her in later years, leading to wheelchair reliance and no energy during her late teaching years and then in retirement, just did not add up. Now I know what I know, I feel MS was the most likely cause. Although, MS is not hereditary but genetically linked. To cap all that, my own mother (who is pathologically unable to discuss MS with me) had Bell's Palsy in her 50s. If it were a detective story, the plot would be thickening.

 

That's enough about us.

 

the most excruciating crushing pains in my back& chest that takes my breath away and can last for days. it was so bad that I thought I was having a heart attack and had an ECG done only to find that my heart is going great guns and if anything is on a bit of a go slow

Totally SNAP here Jayneanne. I have experienced this on a fairly regular basis for many years.

 

I hope being able to relate to we dx'd MSers does not make you certain you have the disease. We mean to comfort you. It has taken me 11 years to receive a scientifically ratified dx. What I found helpful during those years was being able to KNOW I was not imagining the symptoms. You can even doubt yourself - or wonder if you should doubt yourself.

 

We're with you while you wait.

[linds]

Hi Marina,

I have just read your comment about shingles. I have for weeks been experiencing a "shingles"type pain in my leg But no rash or anything. Did you shingles pain go away at all were you able to ease it at all. I'd be very grateful for any help here. Thanx Linda

[linds]

Hi Shirl,

What you say is interesting as my materna grandfather always seemed to have strange symtoms to me. They always said he has arthritis but thinking back I remember all other things he had as well especially (excuse me) bowel troubles and trouble speaking sometimes. Also my younger sister has MS. We were always told that it DID NOT a genetic illness which made me think I was mad for a period until confirmed. Linda

[Jayneanne]

What a fab bunch of people you all are thanks so much, and good to know that there are a few oldies too!

I would just like to add at this point that I am not worrying at all about any outcomes as I have a fairly good attitude to life and if "shit happens" to me than someone else might have escaped, To be honest there are far worse conditions, syndromes and illnesses about and I do believe in just taking each day as it comes.

My 22 year old daughter (number 5) was born with Spina Bifida Occulta and Turners Syndrome. She has had surgeries and constant medical and pharmacuetical interventions and numerous problems which she will continue to encounter for all of her life. However she was brought up to get on with her life without complaining - I am such a hard woman lol - and to do the best she can. In addition she is diagnosed with dyslexia, dyspraxia, deafness, scoliosis and the list goes on.

She studied here in in Lanzarote and is bi-lingual. Passed her matriculation was accepted into University in England and is 2 years into a nursing degree course.

All of that against all the odds. She does not consider herself to have any disabilities and nothing limits her.

What I am trying to say here is that positivity overcomes a great deal

Oops I have gone on a bit sorry........

Very interesting about the possible shingles, bells, MS? connection I shall look a little further into that. My husband yesterday pulled up a site which he thought might be of interest. The jury is still out this end but I thought I would share it with you and see what you think. It might be something that you have already seen before if so I'm sorry, but here goes...

http://www.ms-success.com/

Have got a thousand things to do today

hugs to you all

Jayneanne x

[linds]

Hi Jayneanne,

Your attitude is fantastic. I looked at the site a while ago and was wondering if anyone has actually been involved with this person. He seems to do distance therapy. Linda

[Jayneanne]

Hi Linda,

I must admit I have always been a follower of alternative therapies as I am a reflexologist, however I don't like these people who jump on the CASH bandwagon and am rather dubious about his information.

It seems to me (might be completely wrong) that he has gone after a group of people who are searching for a lifeline and hope for a cure, believing that they might in desperation splash out on 29 dollars (14 GBP or 20 Euros). Not a lot of money, but when the numbers come in, then he could make a tidy sum on sending info over the net.

That is my view as a sceptic, however spinal disalignment will of course bring with it many associated disorders, pain and numbness to name a couple. Therefore it is in all of our interests whether suffering from MS or not to ascertain that our backs are in good working order and strive to maintain a good posture wherever possible (even those who are wheelchairbound).

Oops, gone off on one again!

They say it's good to share

Bye for now

Jayneanne xx

[linds]

Hi Jayanne,

I think you are remarkable that you also de reflexology as wel as look after your large family. I have most of your systoms at the mo and can't do half of what you do! I am also a bit sceptical of that site and Asu is too far to go to check it out ha ha. Do you find reflexogogy helps with your (suspected MS). I would like your view as I would try it for my symtoms. Thanks Linda X

[Jayneanne]

Hi Linda,

I only have one little 4 year old at home so I am not the heroine you think I am. We adopted Abbey a few years ago from Kenya, it was fraught with disasters but came out OK in the end. She is a little darling. My eldest daughter (29) lives next door (or rather should live next door but is mostly in here lol) and the rest of the gang are all in the UK - some are coming for Christmas and New Year though. Then I will be busy, but I love every minute of it!

I don't do as much reflexology as I used to but have been approached by a local private doctors to do a few hours in there. Still thinking about it. At least when I work I can sit down, my hands however are not so good sometimes and that makes it impossible to 'feel' my way around a foot. It has to be one of the most amazing therapies but other than a bit of work on my back on my hand (if that makes sense) I don't really treat myself. It's like the plumber with the dripping taps I guess.

Having said that it is well worth finding a reflexologist in your area and getting a treatment. I have found in the past that it can be very beneficial for many neurological disorders and most especially pain control and relief. In fact it works with the body as a whole and totally chills you out too.

Bye for now

Jayneanne xx