Last reply 1 month ago
any advice

I am new here so hello everyone .
i really dont know where to begin ,sorry i will try to keep this a short as i can .
beginning of July 2017 ,i woke up with a terrible backache ,so went to the doctors and was given pain killers ,but they didn’t help and the pain got worse .so i visited my GP who sent me for MRI .this showed mild scoliosis and a bit of disc protrusion ,i was sent for physio but this made it worse ,so i went to a chiropractor but it was costing to much and it seemed to get worse .
I then had 2 more visits to my GP as my right leg was going numb on and off and my pubic area also ,along with lower back pain worsening .
i then was sent to a spine consultant,who then sent me straight to A & E with a letter ,i saw many drs etc but was sent home after several hours and told i would need another MRI .
dec i had another MRI and a few days later my husband took me to hospital my legs had both gone numb,also my buttocks and groin ,after 7 hrs sent home as no one could read my MRI results from a few days before ,i remember the Dr saying ” nothing we can do today go home ”
eventually after several phone calls and allot of chasing ,i was told nothing to worry about on MRI and that i was being referred to a nureo .
a nureo apponitment was going to be months away ,so i ended up paying private ,to try and speed things up ,after first consultation ,he said i have nerve damage and needed to find out why .
i have had a brain MRI which showed nothing ,evoked potentials showed nothing ,another heat sensitivity test showed nothing .
over the summer my symptoms became much worse ,loss of bowel and bladder control ,very tired ,headaches ,pain in my shoulder ,elbow and wrist and back ,tingling ,restless legs ,and the past few weeks pain eating ,like electric shock,and my hearing going strange .I still have a numb leg and have trouble walking very far ,and numb groin .
i have seen the nureo this week ,he said as the other tests have shown nothing he wont do a lumber puncture ,so im in for a repeat spine MRI in November ,if nothing has changed he wont see me again but if something has he will .
he said he thinks i have MS but will not confirm a diagnosis because its not bad enough yet to show on a clinical test .I have had the worst time ever lately ,I am so fed up with it all ,I am a photographer and been struggling doing weddings all over the summer ,scared i would wet myself or worse ,struggling with pain ,and so tired it was taking over a week to get over just one one days work ,so next year i am not working so much and i fear i may have to give up what i love .
anyone else been in this situation .

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2 months ago

Hi @infinity21 and welcome.

I can understand why you have chosen to join us, as you are going through the most frustrating time. Unfortunately, our bodies are quite complex pieces of kit and our medical experts are not magicians. Some of the tests aren’t as comprehensive as we would like them to be, i.e. MRI scans just don’t provide a comprehensive picture of everything that’s going on.

There’s some information about the diagnostic process here :-

Neurologists have to be sure before they can give a diagnosis of MS. A diagnosis, once given, is very hard to be “ungiven”. Hence, the McDonald Criteria (, a set of factors that have to be fulfilled.

All you can do at the present time is to live healthily, eat healthily and avoid stress. I realise that stress is probably off-the-scale at the moment, but you have to realise that stressing about the situation does not help. In fact, it does actually release chemicals in the brain, which can be harmful to your Central Nervous System (CNS), the area of your body that may be under attack if MS is diagnosed.

It would be helpful for further consultations if you maintain a symptom diary. There are some details of this here :-

I hope this helps in some small way.

2 months ago

Thank you ,I will have a read of all this 😊

2 months ago

On the other hand, it may not be MS at all.

There are people who have lesions on the brain, bad VEP results and Neuro symptoms and not have MS. Conversely, there are people who don’t have any lesions and turn out to have MS (lesions appearing after a couple of years). Have you been tested for MS mimics? Deficiencies, infections, etc?

2 months ago

Yes I’ve been tested for everything ,7 different blood test all sorts ,because I live in the new forest he wanted to rule out lymes .

2 months ago

Of all the ups and downs of my 15 years with MS, nothing has been as dreadful as the period leading to diagnosis. Until the diagnosis is made, you’re entirely on your own with all the worry and none of the support. If it is MS, the treatment regime with the specialist nurses and clinics really does give you the tools for taking back control living well. Trust me on that! Until then, you’ve got to grit your teeth and get through it. Bring out the wine and chocolate…. Sending hugs across the ether, xKay

2 months ago

@infinity21 you are in the worst place in the world, we on this site call it ‘limboland’ None of us would wish a diagnosis of ms on anyone (even our worst enemy) but so many of us were relieved when we were dxd because finally we had an explanation for all our wierd symptons, and to be told that we weren’t going nuts was almost a relief. So it’s swings and roundabouts, but good luck whichever way things go, and if it does turn out to be ms, you know where we are, always here for a natter, a moan, a joke, a tear, a celebration, whatever, and remember if it is ms, there is no such thing as a silly question.😍

2 months ago

Thank you everyone ,very kind ,next MRI 21st Nov ,if nothing found then I’m left waiting to get worse ,but if they do i will hopefully get some help. I am not hoping they find anything but on the other hand I may have answers ,will keep you posted 😊

1 month ago

MRI was done ,I’m still waiting on results ,in one way I don’t want anything found but in another I just want answers ,fed up feeling in pain etc ……….. so I’m waiting

1 month ago

@infinity21 , I do hope the MRI results provide some answers for you.

1 month ago

Try not to stress about it, I know that seems impossible but stress is really bad for people with MS. They have a lot more exacerbations because of stress. I begged my GP for MS tests for at least ten years and he just kept telling me I didn’t have it. He finally wrote a referral to a neuro because he thought I had damaged the nerves in my elbow. In my interview with the neuro he said I’ll test your elbow but I am going to test you for MS also. My nerve pain in my elbow was from MS, my neuro told me he thought I had MS but had to do the tests. Potter

1 month ago

I will keep everyone posted 😊

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