That’s what I’m wondering. Do I need to bother getting the diagnosis. It just seams, like it’s going to be a long process and to what end, there’s no cure. Maybe I’m just causing myself worry, stress, hassle with no real point to it. I’m that confused. If I’ve had it for years then I’m not dead I could just Potter on hope nothing gets worse, just get on with life forget all about it. What do folks think.
Hi Paula, I get where you`re coming from.
It took 22 years to get my diagnosis of Spinal PPMS.
I spent years with a big fat ? on my head. I also spent some years in real fear as I was wrongly told I had HSP…hereditary spastic paraplegia. It has a 50% chance of being passed down…horrendous thought incase I had given it to my kids and grandkids.
But I got peace of mind when I finally knew why I couldnt walk etc.
It may not matter to some. It makes no difference to getting PIP…they arent interested in diagnosis titles…only how you are affected.
My advice would be get yourself diagnosed, then on a DMD. Factor that into a healthy lifestyle and you’ll be giving yourself the best chance going forward.
I’ve seen though where folks have said the dmds are causing more issues than the ms and have side effects.
Although getting a diagnosis may help with regards to claiming on a critical illness policy. Which might help with financial worries.
It depends on how much you feel you need to have answers.
The advantages of having a diagnosis are:
You actually know what you are dealing with, it has a name. It makes for easier discussions with doctors etc
Potential for being offered DMDs if you fit the criteria. You then have the power to decide whether you want to try them.
You are protected by disability discrimination legislation, as you have a diagnosis. Without a diagnosis you do not have protection.
You should hopefully get support from an MS team if you want it.
Disadvantages of having a diagnosis:
You have to declare it to DVLA, and make more frequent reapplications for your driving licence renewal. It may also affect your insurance premium as you have to tell the insurance company.
With a label of MS you might get patronised / pitied by family, friends etc.
Advantages of not having a diagnosis:
It may be a huge battle to get a diagnosis, if you have neurologists who are dismissive, arrogant, incompetent etc. Sadly there are a number that fit that description. The mental strain of being in limbo for a very long time can bring on depression / anxiety, which can bring on relapses, and actually make it more likely to get an incorrect FND diagnosis, as they then view you as someone with primary mental health issues and won’t bother with diagnostic tests. Some neurologists and GPs do gaslight their patients. If you are dealing with those, for sanity it might be better to walk away from the process, as stress is not good for MS - not good for anything! As there is no cure, reduced stress by not pursuing a diagnosis may be as beneficial or better than a long fraught battle with doctors for a diagnosis even if it leads eventually to access to DMDs.
You know you are on your own dealing with your health issues, which can give you greater freedom to actually make decisions about a wider range of aspects of your health. Having health experts in charge often means that people are very passive about their healthcare, and just rely on the doctors for info. You can be your own advocate and researcher, be active in looking after your health. There are plenty of things you can do (supplements, herbs etc) - things which have research behind them that show beneficial effects, but which you’ll not hear about at all from the NHS as they can only promote things that NICE allows them to promote. Some doctors are supportive if you use alternative medicine, but others can be very tetchy as they want to be god.
You don’t have a label. For some people it can mean they can put their health issues to the back of their mind more easily.
Lots to consider. I’ll have the mri of neck and spine. See what shows up. I’ve decided I can live with my issues at the moment so wouldn’t oetsue medication but if in the future that altered least I’d have a diagnosis in place.
Hi Ziola, very well put pros and cons.
Interesting and I agree with what you say.
But my eons long journey to diagnosis wasnt easy. I tried to live without a diagnosis and only came upon the neuro prepared to search afresh, by fluke. Otherwise I would have spent eternity in limbo.
An excellent answer Ziola. Covers all scenarios.
I had my lower back mri yesterday, gp had requested this to see if there was an issue causing numbness. The nurolgist says it wasn’t required but it was too late to cancel or organise a neck one. You never know I might have an issue causing the numbness. I did have sciatica 3 years, ago came out of nowhere and was never investigated
I didnt have my ms diagnosed until may this year - mt first symptom was 21 years ago and over the years have had different relapses but no conection was made. MS was suggested 3 years ago by a private neurologist and the bottom of my world fell out but the NHS neurologist didnt think it was. After tests to ruled out his theory he said we could do a lp to rule out ms aswell but by then my symptoms had gone and was told even if symptoms came back it wouldnt affect any treatment. That wasnt the case as ive now been diagnosed with secondary ms and currently there is no treatment.
if i could turn the clock back i would have had the lp 3 years ago and started on DMD to slow down any progression of this disease and im someone who dislikes drugs but now its anything hat helps!
Having a label was useful to me and I had the label that allows treatment.
I opted for DMT, which is always a gamble but there is good information on both the MS Society and MS Trust websites. These and your MS Team should be your primary sources.
Forums such as this one may reassure/alarm you, but would you go to an unknown person to advise how to fix your car?
The jury is out on some of the diets and supplements. However, taking back control will probably be good for you.
I don’t think sitting back and waiting for a new drug to come along is a real option.
What we can do (and we do not need a diagnosis to do this as it applies to everyone) is:
- Eat well
- Control our weight
- Don’t smoke
- Don’t drink (too much)
- Keep active
- Stay Connected
My own experience was having a few years of not being as well as I used to be. I ended up (with what I now know was a major relapse) falling over at my GPs. He had no idea what was wrong with me, so sent me off to Ambulatory Care Unit of my local hospital where I had all the tests and diagnosed by tea time. The protracted process most people go through must be awful, but there are so many possibilities that need to be considered and eliminated.
I felt the Sword of Damocles hanging over me for a few months, but after considering choice of DMTs and starting it, I needed to get on with my life. I try not to get obsessed with MS, but for me understanding helps. However, I end up coming back to the points made above.
Excellent post crd.
Agreed, great post. Nothing more to add.
I think it really helps if you know what you are dealing with!
I think yes I do need the diagnosis so like folks, say you don’t have to keep trying to explain the unexplainable. I’m just waiting now for mri of kneck and upper spine area.