MS AND DIAGNOSIS!!

I'm in 'nowhere land'. Got lots of MS symptoms been really bad for the last two years yet had no tests!? I had a physical examination by neuro and passed it so he said it's not neurological- which is obviously great if he's right, but he can't/won't/not interested in why I'm getting numbess and all the other symptoms. My doc said he'd do an MRI or lumber puncture to find out- but he hasn't. I'd be interested to know if anyone with MS had a normal physical examination, later going on to get MS?? So I'm sorry I'm no help Jacquiline, I can but empathise with what you're going through. I wish you the best of luck- we've just got to keep fighting our corner!

Lots of hugs

Niki

Sorry I missed you earlier, had to go to bed for a few hours. Well im much the same as yourself although I have had mri and lumbar puncture. I also had an examination by a nuero but like you it was a basic test and I was declared fine. I started with numbness down my right hand side 2 years ago and was told I had a stroke or ms. A stroke was ruled out and that left me with ms. I have also had optical neuritis which mt optician has said is a symptom of ms. I was sent for electr tests which also came back clear. My GP is fantastic and has taken over my care. I find I get very frustrated as people who know me would say \"oh you look well I take it your better now\" all because I dont have anything visible for them to see. If only they knew how hard it is on a daily basis as you never know when your going to have a good day or a bad day.

I really appreciate your response as I was starting to feel I was the only one with with desease.

Sorry I've not been able to get on comp til now. I've had vision problems- blurriness, seeing halos around lights, but don't think it's optic neurosis. Have you thought about changing your neuro? If you phone the MS Society (I think) they'll be able to tell you where your nearest MS clinic is and who the neuros are- it sounds like he hasn't got a clue- it's good that you've got support from your GP though- that makes the world of difference!- Mine's supportive too- otherwise I think I've have just shrivelled up in a corner and stayed there!

At the end of the day we're experiencing these symptoms- our lives are being hugely affected - whether it is MS or something else- they should do all the tests they can(regardless of their precious budgets) until they can found out what it is and how to treat it!!!

We need to be more assertive and fight for ourselves- which is so hard when we feel so awful!!- It sounds like your GP will help you fight.

Good luck and let me know how you get on! x

Well I dont know about you but I think we may be the only two people who use this site and want to find out from others about the desease. Sorry to hear your eyes are playing up. I had electrode tests in January but am still waiting on the results but hey no news is good news. Make sure you get your eyes checked more than the average two years as your eyesight will change quickly. I am a fighter and by the sounds of you, you are also a fighter. I will keep you up to date and you do likewise. aia appreciate your response and dont feel as if im going through it on my own.

Hope the eyes settle.

Thanks for your reply. Is this a new forum? Perhaps that's why people aren't responding yet- I got to it from an American website that said all the messages they'd received have been copied onto the forum? Or maybe I got it wrong. Hopefully it'll pick up when people realise it's here!

Hope you hear soon about the electrodes tests- but as you say hopefully no news is good news!

:D

Take care

Im never seem to be on-line at the right times.

I have entries in under ms & symptoms which Cadwallon kindly responded to. It is a new forum so hopefully given time we will have others to compare with and see how to get the best results.

Hope your eyes are back to normal! Will check back soon.

Look after yourself

I actually got referred to a new nueroligist. Had an appointment within 2 weeks, and got more answers than I have had in the last 2 years. I have been told that on the evidence of his examinations I have a 7 in 10 chance that I have MS, I was also told that if it turns out not to be MS it is his job to find out and he will. I have had bad jerking movements in my legs and over the last few weeks I have have been loosing power of them when walking. Im so glad to be getting answers and not being made to feel its all in my head as most MS sufferers feel. :D

I have also found a charity called The Race Against MS who have oxygen tank treatments and various other treatments which are all drug free. Im considering having a go with the oxygen chamber, I have been told it has a good success rate with relieving symptoms. :D :D :D

Hang in there and you will get sorted. Stand your ground as this is what consultants are paid to do!!

However my wife has MS and so does my brother, and so I do know just a little of how you all are suffering.

For years and years, my wife went through hell. She was suffering the same symptoms that many of you have written about and the doctors kept telling her to stop imagining your ill and get a life. Even family and friends were by this time beginning to think that all her problems were just in her head.

On one occasion my wife was so frustrated and distressed because nobody would take her problems seriously, she broke down and cried in the hospital waiting room. I had done my best to explain to these medical people that she is not imagining her syptoms, but nothing any of us said made any difference with their own diagnosis.

She had all the tests that all you suffers have had and the years just kept ticking by.

Then one day, The specialist she usually saw was on holiday and she had to see a different one. As my wife walked in and sat down, the Neuro specialist said... Ah yes! your the patient with MS.

I know this must sound daft, my wife gave a grin from ear to ear, for at last someone was believing her and they in turn were telling her the truth. It would appear that she had that MS diagnosis written down on her notes and yet it took this new boy to actualy tell her so. We never will know how long ago the medical people knew when it was first truly diagnosed.

I will carry on with this if it interests anybody.

Pete.

My first serious symptoms of MS were numbness in my legs and torso - went to my GP and he did a simple neuro exam, he told me I wasn't numb because numb meant no feeling at all and told me to go away and not to wear such tight jeans!

Had a serious relapse eighteen months later, and went to A&E at Royal London and was admitted. Was diagnosed within a week.

I know many of you said no news is good news, but the sooner you get a diagnosis the sooner you can start Disease Modifying Drugs, which have been shown to be most effective when started early on. You need to hassle your GP for referral to a Neurologist and you must fight to get an MRI as soon as possible. This is the only reliable form of diagnosis for MS.

On a further note, you need an understanding or even just a competent GP if you are diagnosed with MS. The way the system works, your GP rather than your neurologist has to refer you to a secondary specialist, for example a urologist if you have bladder problems. Incredibly, even though your own neurologist says you need to see a urologist, you can still have problems if your GP takes the dinosaur attitude that 'there's nothing you can do for MS'.

So in short, hunt around for a decent GP. It is time-consuming and frustrating, but they are worth their weight in gold!

I am new to this forum, and am looking for any information regarding [b:5d2261adda]pediatric[/b:5d2261adda] optic neuritis / MS. I have an 8 year old son who had sudden onset of total vision loss and MRI confirmed optic neuritis in his left eye during mid August, 2007. He was treated in-hospital with high dose steroids. About 4-5 weeks later, he developed blurred vision, nystagmus, double vision and difficulty walking straight. Brain MRI showed lesions, but none in spine MRI. He was hospitalized again and given high dose steroids. He continues to complain of eye pain when concentrating. Vision is now about 20/50. I am told that it is very rare in children this young. No definite diagnosis has been made yet. I feel like I am on an emotional roller coaster. Any ideas / comments would be greatly welcome. Thank you so much.