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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stumbler
4 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 :-

https://www.mstrust.org.uk/about-ms/what-ms/how-ms-diagnosed

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 (https://www.mstrust.org.uk/a-z/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 :-

https://www.mstrust.org.uk/a-z/diary-symptoms

I hope this helps in some small way.


infinity21
4 months ago

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


gijs
4 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?


infinity21
4 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 .


cameron
4 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


grandma
4 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.😍


infinity21
4 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 😊


infinity21
3 months 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


stumbler
3 months ago

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


potter
3 months 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


infinity21
3 months ago

I will keep everyone posted 😊


infinity21
1 month ago

Well had results ,found nothing,so the nurologist won’t see me anymore ,he said he thinks it’s MS ,if it is I have the best type “What ever that means ” I’ve been back to my GP and it says on my notes being investigated for MS .
All I can do is wait to get worse before anyone will help ,no diagnosis no help ☹ Dr said all I can do is list symptoms and go back to doctors everytime I am not well ,
In some ways finding nothing is good ,but it’s not very helpful .


stumbler
1 month ago

@infinity21 , you’re entitled to request a second opinion.

If it’s not (formal) MS, then you need to know what’s causing your symptoms. Make a chronological list of symptoms, which you can copy and present at consultations.


infinity21
1 month ago

At the moment I have no more consultations ,hospital have said they won’t see me anymore ,but I have been writing everything down for the past 2yrs ,I’ve got quite a fat notebook now 😐 I will go back to my GP ,I going to see if I can get copies of my MRI scans on disc ,my sister has a contact in America who will hopefully look at my scans ,to see if they see anything that may of been missed .


stumbler
1 month ago

@infinity21 , I’d personally take the list of symptoms to your GP and ask them to explain what’s causing them. And don’t get fobbed off.

After all, they are your Primary Care Provider…………


cameron
1 month ago

I agree with @stumbler. As you are entitled to a second opinion, why not take that up? And provided you’re living in England,you can choose to have that second opinion in a centre of excellence e.g. some of the London hospitals (but there are others elsewhere). That was my experience – thank goodness my GP insisted on it! Thanks to that second opinion I got the right diagnosis, prompt treatment and was helped to deal with the MS appropriately.


infinity21
1 month ago

I will give it a go ,thanks for the advice 😊


d1zzy
1 month ago

Hi @infinity21 – I agree with @stumbler too.
I had almost a 4 year gap between neuro appointments, and spent most of that time knowing that my symptoms were getting worse whilst spending a fortune on physio therapy. Soooo frustrating – but my GP eventually referred me back and I got a second opinion. Still waiting for a diagnosis but have had several MRIs and an LP, and feel much better supported by the new neuro.

Good luck!


infinity21
1 month ago

Yesterday I woke up,shoulder pain and Bain worse ,had pain in the side of my face and i kept loosing my hearing in my right ear ,so went to the doctor ,she seemed to think this is related to my poss MS so has put me on steroids for 10 days ,Dr said she is going to go through my whole medical history and see me again next Tuesday, also the hospital will phone me today as I need a hearing test ,she said I need to go back to nureo too ,I hope this is a step in the right direction and I actually get some help now 😊


stumbler
1 month ago

@infinity21 , well, it’s good that your Doctor is taking you seriously and seems to want to get to the bottom of this.

This all takes time, so you need to see if you can relax a bit and give your body some downtime.

Do keep us updated on how this all progresses.


infinity21
1 month ago

I will do thank you 😁


cameron
1 month ago

Just curious – did you get the full battery of MS tests e.g. MRI, evoked potentials, bloods. lumbar puncture?


patricia_ferguson
1 month ago

Welcome and hope we can be of help . i was diagnosed 15 years ago very quickly as i had private medical insurance due to me working for an American company , afraid i feel that they are still not got a hold on this condition and support staff with knowledge have recently let their posts not their fault but the local government i love in Scotland in the central belt so i should have access to the best afraid i don’t but ask away and we will try to help


infinity21
1 month ago

Wow what a week , had a hearing test ,slight loss of hearing on right side and told to stop steroids by ENT they checked my ear and couldn’t find an infection ,I saw my GP again she sent me to A and E as worried about my eye too ,I waited 7 hours to see someone after all that I was sent away with ear drops .I had an appointment again with GP she checked my ear ,no infection so drops not needed at all ,I’ve been off balance and not feeling good at all ,as of Tuesday I am no longer allowed to drive ,due to numbness in my left leg and off balance ,I have had to surrender my licence. But hopefully I can drive an automatic in the future .Dr has also arranged a emergency nureo appointment, which I am waiting for ,not being able to drive has come as a bit of a shock ,I’m self employed photographer with 4 children ,things are very hard now .hopefully I will get answers soon ,my GP has booked fortnightly appointments with me ,to give me support which is really great and I think will be a help .
Will update if anything new happens .


infinity21
1 month ago

@ Cameron
Yes I’ve had all those tests apart from lumber puncture ,specialist wouldn’t do it as nothing was showing on other tests .

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