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Awaiting diagnosis

Heyyy…so I’ve just came across this forum which is amazing ! I am really glad I found it :slight_smile:

Alittle but about good old me, I’m 38 have 3 wonderful kids ages 6,4 & 3, a fabulous husband & work part time.

All 3 kiddies born via csection, after the birth of my last child in 2014 I just didn’t feel too good, referred to gynae to find I suffer from bladder retention, I have been self catheterising since Jan 17, I have had follow up producers & been riddled with UTIs that I am now resistant to oral antibiotics!. My urologist arranged an neurology appointment (had last week) and she suspects MS. I had quite severe memory loss, stuck for words, fatigue and not really having the get up and go that I’m used too - I put all this down to baby brain!! Other symptoms include tingling feet & cheek jaw pain (which I put down to dental!) i am waiting for MRI (full body, brain, spine with GAD contrast) apparently I’m on the urgent list which can take 3 months. I am trying to go private - easier said that done !

I am completely naive to MS & feeling by overwhelmed there is so much information- at a loss of what to do any help much appreciated

thanks

Karen xx

hi karen

you are unlikely to get your MRI before february.

the diagnosis procedure is lengthy and there is a lot, LOT of waiting.

you need to pace yourself, we are all guilty of attempting to do stuff that we will suffer for afterwards.

it must be very hard for you with 3 young children.

so stuff the ironing, nobody ever died of a wrinkled shirt.

playing with your kids doesn’t have to involve marathon sessions in the park.

have loads of cuddles - the best therapy ever!

please have a cuddle for me, my babes are 28 and 30, all i get is a pat on the head as they pass.

have a good think of the unnecessary chores that take up so much of your energy and find ways to cut these down.

if you are offered help, try not to say no.

you will survive, promise!

carole x

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Carole thank you so much for your reply… I honestly feel in a bit of a daze like it’s not really happening to me !! I am trying to stay away from dr google - that defo makes u feel worse & adds to the worry ! I have my urologist appointment tmrw & have booked a private neurologist appt which isn’t until the 13th dec in the meantime I want to think positive & get on with life & enjoy my beautiful babies… the ironing pile is growing but hey who cares lol This forum is wonderful it is full of great advise & support, thank u for taking the time to reply. Hope ur keeping well Karen x

Hi Karen

People quite often have an initial consultation with a private neurologist, but then get referred back to the NHS for tests and any treatment. The initial neuro consult generally costs a few hundred pounds, but an MRI will cost a lot more. Equally, any other tests cost a bomb.

So as you’ve already had an initial consultation with a neurologist, and are waiting for your MRI, I can’t see that going private at this point is going to get you tested any quicker. Unless of course, money is no object. In which case, having a private MRI after a private consultation will speed you up.

And although they may say ‘urgent’ could take 3 months, it may well be that it’s half that.

As Carole said, testing for MS does take time, people do tend to have to be patient. I do know it’s bloody hard to be patient when it’s you and your health. All that goes round your head is the ‘what ifs’.

It could also be the case that you have your MRI and either have to have more tests, or the neurologist adopts a ‘wait and see’ attitude, depending on what comes from the scan.

All we can do really is empathise with you. We know how difficult it is to be living in limbo. So try not to worry, it may take a little while, but hopefully the time will go by, you may have total recovery from your current symptoms and life can get back to normal soon.

Sue

Hi, I had a MRI in September and this had shown up inflammation on both my brain and spinal cord. I had a LP a couple of weeks ago and an Evoke visual test. I requested a copy of a letter from a neurologist that I saw in 1997 and he mentioned recurrent Neuritis (which I was advised I had) but also demyelination which I was unaware of until seeing this letter. I am cutting a very long story short as I don’t want to bore anyone. I was diagnosed with the Neuritis at the same time as ITP (a blood condition) and ME. I was told that the episodes of numbness and tingling and partial blindness were down to the ME. Nine years ago I was diagnosed with Optical Neuritis but have probably only had around 5 bouts of this over the 20 year period, fortunately! I had noticed that if I pushed myself, walking fast or for about 3 miles or so that my foot started slapping and I constantly tripped but this has gotten worse and I now find that I can lose the control of my right leg…infuriating, upsetting, frightening an embarrassing! I sit for 10 mins or so this goes and I can walk properly however if I am very tired I have to take regular breaks. My skin on my right leg from my knee down to my foot is numb and has been for about a year and it used to be that if I experienced this flare up I would get the feeling back within around 6 weeks. It seems that things have progressed hence the reason my doctor referred me to the neurologist. I just wondered if anyone else has experienced similar or has any opinions? I think its highly likely that it has been MS all along as do three of the doctors at my GP Practice. Does anyone know if inflammation on the brain and spine mean lesions? I phoned my GP the other day and they said that my LP is clear although there were traces of protein in it and my blood, I’m not sure whether this indicates MS or not although he thought not. I still haven’t had the result of my EVP test back yet and have been given an appointment for Jan 23 2018. The being in limbo is horrific, I just want to know what the situation is. Wishing all the very best. Teenbo x

Hello Teenbo

Interestingly I too was tested for MS in 1997, was told I didn’t have MS and only 5 years later saw the letter from the neurologist to my GP in which he said there were lesions in my brain and spine, O bands in my CSF and there was clear evidence of a demyelinating condition. But he said ‘we won’t mention MS unless she specifically asks’!

I think this was completely normal practice at that time. There were no DMDs and no real treatment other than a small amount of physio. So diagnosis of MS was a bit pointless, especially after only one relapse (so in today’s world that would be CIS rather than MS and even less useless).

I was actually diagnosed with MS 5 years later and have had a series of much more vicious relapses and haven’t been able to take DMDs for most of the time so have become quite badly disabled by it. A very different course to you.

Obviously, I didn’t have the concurrent diagnoses you have also had, and I was positive for Oligoclonal bands in the CSF, which 95% ish of people diagnosed with MS have.

Obviously periods of ON and numbness could signify MS as a possibility. But negative O bands makes it a bit less likely (though by no means impossible). Basically, the gold standard for MS diagnosis is the McDonald Criteria: https://www.mstrust.org.uk/a-z/mcdonald-criteria and this is all about lesions and relapses. You may have had the relapses, but you haven’t mentioned whether you’ve been MRI scanned and whether this show up lesions. Or is this the inflammation you’ve mentioned?

So you’ve had a negative LP and an EVP test, but have you had a recent MRI? If not, it’s very unlikely you’ll be diagnosed regardless of symptoms. So maybe you should be pushing for an MRI before your January appointment? Perhaps write to the neurologist and ask that one be done?

Sue

Hi Sue,

Thank you for your reply and for your explanation.

I am sorry to hear that you have had such a rough time with relapses and are now quite badly disabled, it must be hard for you.

I had a MRI in September and when the Neurologist phoned me he said that there was several areas of inflammation in both my brain and spinal cord. I said to him “that’s not good is it?” and his response was “no its not good”. He said it looked as though the inflammation had been there for some considerable time but looked as though there had been some recent changes!?!?!. I just don’t understand whether or not the inflammation is lesions or not? I have tried to google this and obviously check this site but I just can’t get any clarity on it. I am seeing my GP next week and will ask her if she can enlighten me. Hopefully by then she may have the Visual Test results as well. I have had so many episodes of numbness over the years, sometimes in my hands legs feet, back or stomach (not all at the same time) and find that if I have a cold or infection of some sort that I am almost always guaranteed a bout of numbness or tingling. I noticed about 12 years ago that walking any distance caused the drop foot slapping but this has gotten worse this year and now if I push it I lose control of my leg. It is worrying me I have to say. I guess I will just have to wait and see what the Consultant says in January.

Thanks again Sue.

Tracy

Hi Tracy

Mm, it sounds like the areas of inflammation ‘might’ be lesions. But who know. The trouble is that the neurologist won’t diagnose you on the phone. And the GP probably won’t be able to diagnose you either. So it seems that you’ll be waiting till the neurology appointment in January.

If you do have foot drop (where your foot either won’t pick up, or slaps down on the floor too fast), there are things that can help with this, either Orthotics (devices that help your foot to remain in the correct position) or functional electrical stimulation (a means of stimulating the nerve that picks up the foot). But it sounds like you are just waiting for a diagnosis of what is actually wrong before you can get to work on specific symptoms.

I hope you get an answer sooner rather than later. Meanwhile, try not to worry about it. Easier said than done I know, but essentially there’s nothing can be done to speed up the results nor the outcome.

Sue

Hi Sue,

Thanks again for your advice. As you say and I agree I think I will just have to wait and see the neurologist in January. Keep well and Ill keep you posted x

Hi sue ur right about going private, my urologist said that I require a ‘visual evoked response & full body MRI’ (what ever that means) according to the neurologist notes and she feels it’s best done thru the nhs. So I’m just going to strap myself in for the wait and delighted I don’t have to pay out privately as it would put so much pressure on us as a family ! I thank you for your reply & hope that ur well in yourself . I’ll keep in touch xx

Hi, I have received a letter from the Consultant who says that my LP and blood test have come back clear/negative. Apparently the response from my eyes was a bit slow in the EVP test indicating there is Optical nerve damage from the past. He states that the results aren’t in keeping with a MS diagnosis and he will see me at my January appointment to discuss the results more in depth with me and talk about monitoring and managing my symptoms. I just want to know what this means, do I have MS or not…grrrr! Teenbo

Hi Tracey It sounds like the neurologist is edging towards the not MS or at least not proven MS diagnosis. I would be surprised if you get much more in January than a ‘let’s wait and see what happens, and do another MRI in 6 or 12 months’! If I’m right, what you maybe need to get sorted in your mind is what ongoing symptoms you have that you’d like help with. I’m thinking in particular of the foot-drop. If the neuro is not going to diagnose MS, then you could still be referred for help with symptoms. So re the foot-drop, if your CCG will fund FES, ask for a referral. If they won’t fund it, then at least get a referral to Orthotics. Also, you could still have contact with an MS nurse and / or physiotherapy or whatever other help you need. In my area there is a community neurological service. Physios, occupational therapists, bowel and bladder services all have a common referral system. The MS nurse can be accessed form there as well. So you could see if there’s something like this (I’m in West Sussex) to whom you could be referred. I may of course be wrong and you will be diagnosed with MS. In which case, you’ll need to think about disease modifying drugs (assuming its relapsing remitting). But the other services may be useful too. Sue

Awaiting Diagnosis hi everybody , I was wondering how long from tests to diagnosis to treatment people have had to wait , as I had the blurred vision and a slight limp so went docs , they found I was B12 deficient and vit d very low , so I had the B12 jabs for 2 weeks but then didn’t really perl me up and then the vit d for a few weeks to get that up , then returned to docs where I was looked at by a neuro consultant who referred me to have MRI and lumber puncher test and bloods again , this appointment came quick and after 2 months iam still waiting for an appointment from the neuro to see me , during this time I have got the written report of my tests and it looks like MS , so much fatigue and limp left leg unbalance and really can’t walk much with out feeling im going to collapse or fall over . How long have people had to wait to see there neuro consultant for results and treatment?? I was thinking of going private to have the results made more clear to me and get the diagnosis made , and hopefully treatment ?? Just worried of being lost in the system of the NHS and waiting around to long to get treatment as I feel like most days im getting worse and things can’t be helped … So my question is how have people have to wait to get to treatment stage and what was they given … tablets , injections ?? can anyone advise as im worried about work as I had been off now for 5 months . thanks again

The answer to your question is impossible I’m afraid. It depends on where you are in the country, who your neurologist is, etc, etc. In your position, I’d try phoning the appointments team at your hospital to make sure your appointment is in process. Failing that, phone the neurologists secretary to ask him/her when your appointment is likely to be. You’ve said your results look like MS is your likely diagnosis. Is that because the information on the letter actually spells it out? I’ll assume that is the case and that basically all you need is to sit down in front of a neurologist and have it officially confirmed. Then you’ll be able to move on. With regard to treatment, it really depends on quite a few things. Firstly, if you are diagnosed with relapsing remitting MS, you should be offered a disease modifying drug (DMD). See the MS Trust information about diagnosis https://www.mstrust.org.uk/a-z/diagnosis and their Decision Aid to get information about DMDs https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid Next, there will be specific drugs and treatments depending on what symptoms you have ongoing. For example, you could be referred for physiotherapy or offered a drug to help with a symptom like pain or for eg, urinary urgency. That wil depend entirely on how you are affected. You’d also expect to be put in contact with an MS nurse who will help guide you through the DMD decision and treatment maze. Taking yourself into the private sector at this point might not help you too much. All the tests you’ve had so far I assume were done on the NHS, so the results will be with the NHS hospital and neurologist. So seeing a private neurologist might mean (assuming they can access your test results) that you get a diagnosis, but as for referrals for other treatments and accessing DMDs would require that you be referred back to the NHS. So might even set you back rather than forward. You are probably better off trying to ensure your next appointment with the NHS neurologist is soon rather than confusing matters by seeing a private neuro. If you have no luck getting an appointment sorted yourself, try to get some assistance from your GP. Sue

Hi Sue,

Sorry for the late reply. Thank you once again for your advice and help, very much appreciated. I get the same impression that the Consultant is veering towards this not being MS. While this would be great my concern is what on earth has been going on for the last twenty years??? I have more or less settled myself to waiting till January but as you say not holding out much hope of an answer. The foot drop and having problems with moving my leg forward do only happen if I walk fast for a period of time and push it. My husband said “well you know that happens so just don’t push it and you can be a lazy besom for the rest of your days lol”. He wasn’t being flippant but in essence was saying to accept and manage the problem.

I hope you are keeping ok?

Thanks again Sue.

Hi ssssue ,

Finally saw the neuro consultant after 6 months and he confirmed it is MS ,so he now has to write to my GP to refer me to a MS nurse and to just put me on amitriptyline to help me sleep and pramipexole for the leg twiches , other than that im on a waiting game again to get proper meds for this condition , ive chased neuro docs and GPs and its getting me nowhere …

Wouldnt it be better if it was treated now to stop any further progression ??

Ive cancelled the private doc as i think i will be paying to start all over again like going backwards so thats a no no … i would like my balance back and also my life but looks like im in for a long road ahead …

Does everyone have to wait for a ms nurse and to get the meds they need ??? i am wondering ?? as the neuro consultant said it would be around 4 months wait … and as the neuro hasnt really given me much my GP wont even give me anything even for a headacke !!!

maybe its me , maybe im asking too much … i dont know ???

My wife who already had problems suddenly went totally numb down one side in march this year, Gp she saw seemed on the ball and suspected ms and referred for head mri,which i think was early june may be? saw a seemingly great neuro late july who pretty much diagnosed MS based on report of Mri,history,examination etc but couldn’t actually view the Scans.We then went to next appt in early sept expecting to discuss possible drugs to find a junior neuro(other had left),scans still not viewed. 2 days later they were viewed and discussed at departmental meeting,letter to gp said MS specialist had agreed to see her. 2 months later(early nov) hadn’t heard anything so got her to chase up to find out nothing had been done,apology received and now added to list! Got the appointment through last week for middle of March,so a whole year to get to hopefully even discussing treatment for her! I know there is no magic cure but its frustrating watching her seemingly getting worse at times(now) and struggling so much.The real worry for us is if by that that time they decide its progressive and dont offer any injections.

Hi Skipchaser, Sorry about your diagnosis. Just to give you my timelines: - saw private Neuro, as NHS (non MS Neuro) said that I had low/medium risk of developing MS after Optic Neuritis and discharged me - 2nd of September, private Neuro diagnoses me - 28th of November, I see him for the first time on the NHS (after chasing everyone A LOT to get this appointment) - 28th of December, I have an appointment to see the MS Nurse for Tecfidera screening - He said on the 28th of November, he will see me again in 4 months time -I also requested a new MRI scan, which he said he will arrange but there will be a wait (which is fine by me) I don’t know how long it will be between me seeing the MS nurse, for the Tec screening and actually getting my first tablets. I am not holding my breath, that’s for sure. I think maybe in February I will get the medication. I am in London, which as we all know, is a very busy place to be. But these have been my waiting times so far. Good luck! Emily

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Hey everyone so I’ve had a little update, (still very much in limbo) had my mri & evoked responses tests my neurologist called today to say there is something on the scan but she’s not sure what it is ?? Is this normal ?? Do neurologists not want to commit at this early stage?? She has organised a lumber puncture and says she will arrange to see me after this in the new year. I don’t feel my symptoms have worsened if anything they have improved (apart from the bladder retention) - is this normal ?? Sorry for all the questions any advice much appreciated xxx

It’s possible the neurologist is doing a LP to clarify matters. It does sound as though a positive LP might be what tilts him/her towards a diagnosis. Have a look at https://www.mstrust.org.uk/a-z/lumbar-puncture

The fact that your symptoms have improved is an excellent sign. It means that if the answer is yes, it is MS, it will probably be relapsing remitting. This will then mean you can get a disease modifying drug to reduce the number and severity of relapses.

Come back on here when you need to for more help.

Sue