WORRYING

[Michelle]

Hiya Skatty,

Streuth oxoxox.. The amp tablets are antidepressants... but are used for other things..

I mentioned them in the Gabapentin post.. My neuro wants me to increase my dose even higher.. I have actually decreased them

Taking them will definately not help if you want to feel lively again.. Thats my thoughts on that one.. I would go so far as to say that to feel lively again it would have to be something like Prozac or one of those other serotonin ( not sure of spelling there ) based meds to help you feel livelier ( having real bad probs with spelling today )

Or maybe we could all be beamed up by aliens who would just give us new bodies

You never know Skatty that might be just as likely as getting someone to take notice

Seriously, I know you have been dreaded it, but I would def go for a second opion.....

 

Love Michelle

[Richas]

Appoinment was a total waste of time, still no answers, not listened to properly and basically after the clinical evidence of one MRI I am being told that I do not have anything seriously wrong i.e. of neurological origin so have been advised to go to GP in a week or so for a prescription of anti-ds.

 

Aaargh, I know where you are coming from. I don't have any answers to this but I thought you might be interested in this extract from a British Medical Journal item in March 2006. It is a bit heavy but the final paragraph is startling given out shared experience of Neoros and MRI scans. (Thanks to MSRC)

 

http://tinyurl.com/jmkxt

 

 

Questions over accuracy of MRI in diagnosing multiple sclerosis

 

Accuracy of magnetic resonance imaging for the diagnosis of multiple sclerosis: systematic review; BMJ online first.

 

The accuracy of magnetic resonance imaging ( MRI) is not sufficient to rule in or rule out a diagnosis of MS with a high degree of certainty, finds a study published online by the BMJ today.

 

MRI has been adopted in England and Wales by the National Institute for Health and Clinical Excellence ( NICE) as part of the recommended criteria for diagnosing multiple sclerosis. Although its accuracy has been assessed, the evidence has not previously been systematically assessed.

 

Researchers analysed 29 studies to assess the accuracy of magnetic resonance imaging criteria for the early diagnosis of multiple sclerosis in patients with suspected disease. Each study compared MRI criteria to a reference standard for the diagnosis of multiple sclerosis. The average duration of follow-up ranged from seven months to 14 years.

 

Considerable weaknesses existed in the studies included in the review, and studies with methodological flaws overestimated the diagnostic accuracy of MRI.

 

Only two studies followed patients for more than 10 years, and these suggested that the role of magnetic resonance imaging either in ruling in or ruling out multiple sclerosis is limited. Patients with a first attack suggestive of MS have around a 60% probability of developing MS, this is increased to between 75 and 84% in those with a positive MRI scan and decreased to between 43 and 57% in those with a negative scan over 10-14 years.

 

The results suggest that use of magnetic resonance imaging to confirm multiple sclerosis on the basis of a single attack of neurological dysfunction may lead to over-diagnosis and over-treatment.

 

"There is a real danger of giving patients a serious diagnosis which will affect their lives but may turn out to be incorrect later on," says Penny Whiting.

 

Dr Jonathan Sterne adds: "Neurologists should discuss potential consequences of false positive and false negative magnetic resonance imaging results with their patients."

 

Source: British Medical Journal

[ddgorgeous]

It is amazing. After years of investigation and no doubt untold amounts of money invested, they still have do not have an accuarte tool that could identify, or rule MS out.

 

Ron

[Gaynor]

Hi Skatt,

 

I'm sorry it didn't go well and you didn't get anywhere with the appt.

 

We're here for you and will try to keep you cheery during your and moments.

 

Keep the faith,

 

Gaynor

[SkattyBell]

My GP is now chasing me, how wierd!

They want me to go in and discuss things re. appointment with neuro. last week.

I am booked in Thurs. am. I really do not want to go, but I suppose I must bite the bullet. I am going to write down how I feel about everything and why I am reluctant to take amyptryline? given that one of my major issues is the lack of enrgy and fatigue plus the odd times that I feel dizzy/nauseous, not forgetting all the spacey days where I become pure platinum with all the cognitive clangers I drop!

Ah well, we'll see......

O.X.O.

Skatty.

[Markie]

Hi Skatty , nice to see you posting

I think the list would be a good idea. As these sessions / visits can get a bit stressful and emotional. Makes a change them chasing you. Go in there with an open mind and put your worries across, that way you are not seen as unreasonable and confrontational. Hope all goes well.

 

Mark + ANN xxxx

[Michelle]

Laughing here Skatty,

It's amazing isn't it that after all this time and all the struggle you have been through that they are chasing you...

Make sure you go along to the appointment.. I really did not want to go to the dla appointment but bit the bullet and went... It's all a pain in the butt, but needs must i am afraid...

I get along with the amitriptyline tabs they were and are a great help with spasms.. But as you rightfully say they are not the best when it comes to making you more fatiqued..

Our best wishes and good vibes are with you..

Love Michelle

[Gaynor]

That's good that they're chasing you up now.

 

Good luck with that and let's know how you get on,

 

Gaynor

[ddgorgeous]

Skatty,

 

Great news that things seem to be moving forward for you. Why not try and bring your partner with you. I know I forget to ask so many things, even with some notes. To have a second person would be so advantageous, even to listen to the Doc's answers.

 

Please let us know how you get on and keep us all advised.

 

Ron

[SkattyBell]

Just a quick update.

I am going to try and persuade my parttner, Richard to come with me tomorrow as I do not feel good at all at themo. (Just rang him, no can do.)

I have booked myself in at the opticians to check my eyes as I have had an episode of distorted/rippling vision in my left eye alomg with a minor ache, whilst walking back from school this morning, my hearing is not quite right either and I appear to have developed the shakes today. I feel sick and clammy, my tongue and mouth are not right again either, so after I have got my necessaries out of the way today I am going for a rest. It is good that I am booked in before my docs. at the opticians, I get a free hearing test afterwards too, so some benefit has come from my short-sightedness, I have been given priority with me being a customer already.

I will be tempted to ask any Tom, Dick or Harry to come with me to the doc's at the mo. as I am struggling to articulate things properly speech/thinking wise.

Take care all. Will let you know how things go.

O.X.O

Skatty.

[Gaynor]

Hiya Skatty,

 

Sorry you may well be going alone to your appt. That's not nice when you need the support from those closest to you. Obviously I don't know reasons why your partner can't go with you.....my hubby tries his best to go to mine too but sometimes he's away with his job so it's never pleasant when that happens. Therefore with no family around where I live I then have to go it alone too.

 

Anyway - yes, you rest today and at least all will be fully checked out soon (with a full MOT it seems!) and you can go on from there.

 

We'll be with you in mind if not in person and thinking of you

 

Gaynor

[SkattyBell]

Thanks Gaynor,

I know people lead such busy lives in general, it is often quite hard to find support even when one goes off in search of it. I'll have to see what I can rustle up.

Not to worry if not. I have always been little Miss Independant anyway, so I'll cope.

Got to get on now so I can eventually get my head down. Catch you all later.

 

O.X.O.

Skats.

[ddgorgeous]

Skatty,

 

Would a close friend be able to accompany you? Someone who knows you well and knows about your symptoms. If nothing else, for moral support.

 

Ron

[Lula_lulabel]

Hi Belle,

 

Where abouts are you? If I'm close enough... I will take you honey

 

Love and hugs Lula x

[SkattyBell]

Awww! Bless!

Thankyou Lula. I'm choked!

Have not had my eye exam or ear test. I arrived early doors only to be told I had got there a DAY EARLY! My app. is'nt till tomorrow!

Been to docs. and they just wanted me in to discuss how things had gone with my neuro appointment and how I felt.

Declined the amitriptyl and explained that I was greatful for help being offered, but at this stage 'no thankyou' she said that things must be difficult not having a DX. (UNDERSTATEMENT!)

I explained that the main issue for me was that I have a list of symptoms that wouldtake eons to go through and that I have slowly being getting worse and my worry was that I often go away thinking I can carry on as 'normal' hoping that there really isn't anything seriously wrong; only to find that everything is still there and things obviously are'nt right. I am frightened to take things further because I am fully aware that some diagnostic tests can be uncomfortable/invasive and with nothing showing on the brain MRI.... ? On the other hand if I do not pursue anything I am doing myself and others an injustice. I also mentioned about going to get my eyes and ears checked after one or two 'wierd' episodes/symptoms(all thankfully short-lived, but still worrying). She agreed that this was sensible. She did ask how all the tests came about and what first started it all off.

She still seems to think that it sounds a little like CFS, I did say the jury was still out on that one as far as I knew. Would not make much difference as the nearest clinic for this is too far away, we used to have one, but no longer available in the area.

So after all this I am still no further along. I have the option of newer type of anti- ds with less side effects if I want at a future date. That's the sum of it all. It's over to me!

O.X.O.

Skatty.

[SkattyBell]

P.S. Lula,

Like the sound of 'Belle' It makes me sound so glam!

[Gaynor]

Mm.....Skatty so do you want/ think you should go ahead then with further dx tests.... although a little invasive?

Anyway get your eyes/ears sorted first and see what comes of those, and have a think in the meantime. however.... I'm not sure if it's common to have a clear MRI with the other tests indicative of MS.

 

Mm.....I mean I hope it's not MS obviously, but I would want to get to the bottom of it.

 

Gaynor

[Lula_lulabel]

Hi Belle...

 

Firstly Belle... you are glam, honey and always will be. Secondly... you are obviously an intelligent woman who needs to understand what is happenning to her body. I think it is important for you to get to the bottom of all this, and if that means an invasive proceedure, then all-be-it! Sometimes we just have to face it head-on, we are all here to support you. A few minutes of discomfort is nothing in the big scheme of things. If you leave it and don't get answers... the worry will stagnate inside you and eat you up. Limboland is a very frightenning place to reside. Denial is not a river in Egypt... not an option this far down the line, and if you are diagnosed then you can take action and get the right treatment. LDN being an option once diagnosed. As far as the meds you have refused from your doctor, good for you! Never say never tho babe! Oh yes and the clear MRI doesn't rule out MS, it just means that they didn't see any large leigions active in your brain. Did they MRI your spine too... or just do head and neck? You may have active leigions in your spine. All in all I am here for you honey, and whatever you decide, and whatever the diagnosis is, you can adapt to the outcome amoungst friends.

 

Love and (((((hugs))))) Lula x

[Hils]

Hear, hear.

 

But as I'm not half as good at putting thoughts into words as some of the others here, I just want you to know that I'm thinking of you Skatty....

 

Hils

[SkattyBell]

Hiya everyone,

Let's get the technicalities out the window first.

Hearing test. The very nice, kind, gentleman is sending my GP a note advising for a referral to E.M.I? clinic, he is concerned that although I have a slight pattern of decline in one ear, that this should'nt be happening in someone of my age, coupled with the balance/nausea/clumsiness and other altered sensations within my hearing that he seems to think sound more like my signals are not reaching/communicating to my ears properly as opposed to any physical damage i.e. to eardrum/inner ear e.tc. He said he will word things carefully as he does'nt want to give the impression of telling them their job. BRAVO!

My general vision (short-sightedness) has actually improved, but optician did say some of the visual disturbances were a littl strange, I think he thought I was a little strange too! Have to go back next week and see my pal, the contact lens guy just to check that they do not need altering.

Lula, no I have'nt had any MRI or LP of spine, only one of head, I'm not even sure if neck was included?

I am not totally ruling out anti-ds, just not the one offered by neuro and at the mo. I feel I am managing in a fashion without them, like you say I wo'nt dismiss them altogether, the option is there if needed.

Slowly, I might be gaining some ground, somewhere. If I could get the pennies saved I am seriously considering going private at some point.

So, thankyou all just for being here. I come from strong stock, so my gran always told me, bless her. I am only so open because I know ther are others that might be in a similar position and I think any info. is better than none.Plus I gain a bit in therapeutic value from babbling on!

Take care all, much love.

O.X.O.

Skats. A.K.A. 'BELLE.' - GLAMOUR PUSS!

[SkattyBell]

FLAMIN' 'ECK!

Just took a really good look at that last pic. I wish!!

[Gaynor]

Skatty - pm'ing you

 

Gaynor

[SkattyBell]

Gaynor, What am I like?

The more I look at it. EMI? I am almost passing out here with laughing at myself!

I am not sure what he said E.M.G? I have'nt got a clue, I am just sooo dizzy lately.

No doubt I shall find out when referral comes through.... Oh dear...!

Skatty.

O.X.O.

P.S. It even took a while to understand what PM-ing meant also!

[Gaynor]

Glad it gave you a laugh anyway!

 

Gaynor

[SkattyBell]

Laughed so much, I need a nap now!

Catch you all soon.

Skats.

O.X.O.