Has anyone been in a similar situation with DX?

New diagnosis and before diagnosis
1

Hi All

I am hoping to get some good advice from someone based on their own experiences.

A little about my situation:

I’m a 43 year old male who had spinal surgery in 1992 after a rugby match and had two discs L4 & L5 partly removed, as a result of this I have become accustomed to great levels of pain and numbness and tingling in the legs and just kind of got on with life and worked through the slipped discs when they happen (normally annually), and never had cause to think that numbness was connected to the surgery.

Until in 2006 I woke up and had suddenly lost the sight in my left eye, I was taken to the eye hospital in Bristol and quickly diagnosed with Optic Neuritis, my sight returned to near original state about 3 months later, following on from this my GP ordered an MRI on the brain which was the point that had me worried (naturally), he explained the reasoning behind the MRI with regards to looking for lesions on the brain that may have been caused by the Optic Neuritis.

When I returned to the GP for results he said that the MRI revealed no lesions and basically to get on with life unless anything else occurred.

It’s at this point I begin to feel very foolish admitting that I have had many moments when things aren’t right but have tried to just soldier on and wait until symptoms subside, some of which can be linked to the remnants of spinal surgery but other that mimic MS symptoms.

I would say these episodes come once or twice a year, however they are increasing in severity each time, I am just starting to feel better for the first time in two weeks, two weeks of cognitive difficulties, extreme fatigue, continence issues, dizziness, balance problems, eye flashes, and a general state of forgetfulness.

The last time I spoke to my GP about this he did agree that with the ON 8 years ago and other symptoms that perhaps MS is a consideration and mentioned about a spinal tap, I asked about the scar tissue from my previous op and then he said it would increase the risk of complications, so I declined on that basis.

So while I think that there is a strong chance that I do have MS (and I am now accepting of that after being unwell on and off for 8 years) the advice I am looking for is how I should approach the future?

I have an apt with the neuro team in Bristol at the end of this month, this was arranged at my requests, all previous visits have resulted in a few dexterity tests, some notes taken down and told thanks very much see you again some time.

But based on the severity of the most recent attack that drastically reduced my mobility I am insistent that something more needs to be done to get a diagnosis and subsequent support.

So has anyone else managed to get a diagnosis without a spinal tap and clear MRI?

I’m thinking perhaps I should request a further MRI particularly as the most recent attack is still happening . It’s great to feel awake and alive today though after a week of walking through glue with heavy hands pushing down the shoulders.

One thing is for sure from previous neuro appts that no effort is made from the staff to investigate further into a diagnosis, this time I will not be so passive and will ask for more attention to detail.

Any advice from anyone who has had similar issues with dx would be really appreciated J

2

hey you

ok firstly do not presume you will get loads more support cos you get a diagnosis. Meds can do so much but looking at diet and exercise and lifestyle plus getting rid of stress as much as poss…will bring you the change you need in order to make the best use of meds. Do not wait for a diagnosis. You know especially as someone who is body aware ( I was very sporty) how you feel and what you need to do to help yourself…I don’t mean meds wise…go through the normal channels but get connected with people ( like coming on here) who understand how you feel. I can recommend if that is ok… not sure if we are allowed on here…‘I Have M S and I’m Fabulous’ which is on facebook… it if free and has people from all around the world on it.

.There are books for M S diet… cos you have neuro problems anyway ( I have also had a back op-minor) any diet that ensures neurones are well fed would be excellent. It is not that you cant have nice stuff as well but you must make sure you are providing your neurones what they need. The Wahls Diet looks good but you can research what is best for you :)…The Wahls Protocol Terry Walls M D ( she has M S)…I am 45…live down in Cornwall and haven’t even got an official diagnosis but have classic symptoms and have been ill for about 20 years… don’t push yourself when it comes to looking into different symptoms…I was rendered unable to move from neck down when I was first ill…was so weird but there is always hope you will get things back don’t give up.I can run for 20 mins/swim in morning…so things don’t remain the same

…BUT The best advice I can give you is the one my Neurologist gave me…DO ONLY WHAT YOU ENJOY… in other words don’t waste your energy on things that are not important to you…you have only so much energy and it isnt that you can’t do this or that but you have to decide what to spend that energy on. Can recommend getting into swimming and if you can’t swim learn to…lol… seriously important as I have found my ability to walk/run lessens( and have had a back op so water is better for support)… just take control and decide you are not going to let this get the better of you…you can not change what is going on physically ( well you can by making sure you give the body decent food to heal if it can), but you can be open to having a good cry to get emotion out… you can be open to working out how to avoid stress… to changing your lifestyle…and doing what you can … I am sorry if I sound so strong…I was left as a single disabled mum in my 20s…it was tough but in a way it has meant at 45 although I am not well enough to work I am keeping as physically well as possible…and have a quality of life that I may not have if I hadn’t taken hold of looking after myself…I am currently looking into getting an endless pool for the yard as I am heat intolerant and leisure pools are too hot

don’t be passive…brilliant… I would say you think you may have M S. and ask to have tests but they can only definitely confirm a lesion if you are having symptoms that correspond with the scar on your brain around the time you are having the symptoms ( which can come and go anyway)…they need to have a postive result in the lumbar puncture ( but tbh I wont have any more of them cos of my back op…wont let them touch my back anymore)…you can have electro magnetic test etc etc … …but sometimes the tests are not conclusive…get on the facebook page and begin to speak to peeps who will know what you are talking about more. I actually dont take meds. a lot of people do…but everyone has different experiences and even though a lot of the peopl on the facebook page live in the USA you will be encouraged how peeps fight…

anyway sorry to go on but I have had back op and am or rather was very sporty… it is quite normal for them to take a while to confirm a diagnosis so you are not on your own…you are not going mad…:)…regards :slight_smile:

3

Hi there,

Yes, it is entirely possible to get a diagnosis without a “spinal tap” (properly called a lumbar puncture). I did, and so did a number of others here. There is no single test that proves OR disproves MS - they have to look at the totality of the evidence.

A lumbar puncture may be a helpful piece of the jigsaw, but a clear one doesn’t mean you cannot have MS, and conversely, a small number of healthy people have an abnormal LP. It is perfectly possible to diagnose without one, if other evidence - especially MRI and symptom history - is sufficiently compelling.

I do think, however, that diagnosis will be problematic if the MRI remains clear. It is technically permitted, under diagnostic guidelines, to diagnose on symptom history alone. In days gone by, this would have been the only way of diagnosing! However, it is very rare these days, and I think most neuros would have some reservations about the reliability of the diagnosis

Tina

4

Hello kevdave

You could discuss having a spinal MRI with neuros. Possible lesions on your spine could be the cause of your continence problems.

Good luck x

5

Thank you all for your contributions, some really helpful information that I can take into my appt next week, feeling a bit foolish for riding out so many attacks in the past 8 years and trying to deal with it alone, in hindsight if I had flagged all my relapses I would probably be in a better position now support wise.

Middlesmum, if I took the advice of your Neurologist and only did things I enjoyed I think, in fact no, I know I would be be homeless in 3 months as I do not enjoy my job and the stress that goes with it. :slight_smile:

6

Hi, I had problems getting a diagnosis too. After 5 years of seeing neuros twice a year, and presenting as typical PPMS, I tried to pin the next neuro down about me not having a diagnosis. After the discussion, he finally gave me a 95% diagnosis of PPMS. Id had 4 MRIs and only 1 showed a white` mark on the middle area of my spinal cord. This mark was pointed out, but was not thought to be of any significance. I had 3 more MRIs, 2 EMGs, a VEP test, plus many blood tests. Nothing proved MS, but other conditions were ruled out.

Then 8 years later, a different neuro said I did not have MS, but HSP ie hereditary spastic paraparesis.

My world was turned upside down. We tried to make sense of this new diagnosis. We trawled my family back ground, but were unable to find a link.

The following year, yet another neuro dismissed the HSP label and returned it to one of PPMS!!! Can you imagine my feelings of frustration.

Wait for this…the following year, I saw a neuro who specialised in HSP and he confirmed that dx without doubt!

luv Pollx

7

Hi Kevdave

I was dx without a lumbar puncture. However, I had two relapses within 3-4 months whilst under the care of the same neuro. I also had two MRIs over that time which showed lesions on my brain and spine that had increased in both size and number.

I definitely think it would be worth you requesting a further MRI. Am I right in thinking your last MRI was in 2006? (sorry if I have read that wrong). If that is the case, then I definitely think that now might be the time for another one. Especially as your symptoms seem to be worsening

Keep us posted xx

8

Hi kevDave

I wouldn’t get your hopes up. I am in a very similar position to you and I am still in limbo. I have had an MRI which shows lesions in the brain and also the spine. I have had a positive lumbar puncture which has shown O bands and still have no formal diagnosis.

I have had multiple “events” over the last 5 years which I can probabaly relate to being MS attacks but only one which led to my current investigations. I have been pretty much left to get on with my life and like the previous five years, will probably put future “MS” related events down to bad luck or dismiss them in general, as they will probably (hopefully) clear up in a few weeks/ months as I have previously found.

My neuro is waiting for me to have a second disabling attack before he will formally diagnose me and start me on any disease modifying drugs. I understand why, its because under him, I have only had the one significant event, to be MS it has to be multiple. He cannot (alledgely) take into account any of my other past episodes as he has not seen them and cannot therefore prove that they were MS related, fair enough. He doesn’t believe in sensory symptoms in MS and most of our meetings have resulted in disagreement. In fact, most of my appointments have been simply a meet and greet with MS nurses and other staff.

Its my own personal opinion and take it as you please, but if I could turn the clock back, I would not be going to Bristol and would be heading down the A4 to Bath. They have different approaches to the treatment and diagnosis of MS and I do know of somebody who was offered DMDs after the one clinical attack.

Best of luck

9

Hi Pandagal, yes your quite right it was 2006, I had to think twice then, the wonders of poor memory eh! Im off to hospital a week tomorrow and have already made my mind up that I will not leave the room until I know someone is going to follow up this visit with further investigation, as I may have said before I have buried lots of symptoms from the medics previously with an attitude of just wanting to get on with life so Ive only myself to look at for the current situation and the 8 years time lapse really.

There is no doubt that the illenss has upped its game, not content with raising the pain levels I believe the lastest torso pains I have been getting sound very similar to MS Hug, cramping muscles iunder the rib cage that come and go, this is a new symptom for me that I have never had before, why it is called a hug i do not know, hugs are supposed to be pleasurable arent they?!

Anyway thats just another one to add to a list that is certainly growing, oddly just 72 hours ago I thought this relapse had passed, the burning in the legs had gone and had been pain free for 48 hours, no fatigue, no diziness and a huge improvement in mobility, then 24 hours later I get these new pains and left foot was totally numb all day yesterday and pins and needles felt a bit more like darts, and so far today is a good day, its consistently inconsistent as we all know!

Anon, I’m sorry to hear you too are still in limbo, hopes wise I’m not expecting great healthcare, from mechanical problems I have had in my spine Ive done enough visits to guage a certain level of care and compassion from Southmead Hospital, I find the whole Neuro approach in your case rather disheartening, sure he/she should trust in notes from previous Neuro?

Thank you for the tip for Bath, will look into this if Southmead show little interest, not sure if I could just change hospitals but will certainly bear it in mind.

Off to Glastonbury next week for 4 nights so hoping to get a repreive for a while :wink:

10

Hi just to let you know, I was diagnosed in bath after 1 attack oct 2012 and offered dmds and told I had mild ms. I then had other issues which I was told were not ms and due to anxiety. I paid to see a neuro in bristol who didnt say much different april 2013. After fighting I went to the mineral hospital dec 2013 all with help from gp who said from an old mri from april 2013 I had a prolapsed disc. Bath or bristol didnt pick this up. I then saw a neoro surgen in bristol in jan 2014 who confirmed this. I have since seen a neuro in london who I am now confident in who said my ms is not mild and wikl stay with for my ms care. This just highlights all hospitals can make mistakes / have different opinions and u have to be pro active in your care and it is possible to keep searching untill u find a neuro u are happy with and it dosent have to be in ur area and see differnt specialists as you may have seperate issues going on as I did. Bath though do seem to offer dmds quicker and push the benefits . Bristol seem to say its up to u and seem to be lessactive in making people go on them. This is all though just personnal experience and from speaking to people who use both hospitals. I hope this is useful and just highlights that if u are not happy keeping pushing.

11

You don’t need a lumbar puncture (spinal tap) you can have evoked potential test - read about it in the site and your symptoms merit another Neuro clinical examination, maybe another MRI. Insist on a referral to Neuro, you need to be assertive. Good luck Susi

12

Hi All and thanks for responses, I went to see Neuro at the all new Southmead Hospital in Bristol today, feels more like an airport departure lounge with Costa Coffee and such like!

Anyway the important stuff which really matters, very positive and detailed meeting that lasted about 30 minutes, Neuro said I had been written to a couple of years ago for a follow up but I think a) I forgot or b) didnt see letter, he was extremely supportive and helpful.

Next up is a full MRI from brain down the spinal chord, an evoked potential test and a memory test, importantly the MS term was used quite regularly by the Neuro having spoke about relapses over the past three years and he advised me that spinal tap may not be required, I get the feeling this guy reall wants to get to the bottom and get a DX at the earliest opportunity, he spoke about MS nurses and such like.

In summary I could not have asked for more from the visit, just a shame the waiting time is 6 months with a similar time frame to gather all the results from the three tests, but it’s a big positive going in the right direction to get support :slight_smile:

One interesing thing he did pick up on from this and a previous visit was a certain level of anxiety from within that maybe worsening symptoms, so CBT is going tbe arranged with GP to get support from this side of things, given that anxiety has existed since childhood it seems a logical thing to do to try and decipher what is causing a particular symptom.

Thanks again all for previous feedback, best wishes to you :slight_smile: