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Of what value is a diagnosis?

Hello,

This is my first post. I am 55y and think that I have probably had ms for 30 odd years. In my early twenties foloowing ‘flu-like’ symptoms and a period of phenomenal fatigue I spent a few days in bed having lost the use of my legs. I have had nothing as severe as this in the intervening years but have had frequently recurring and transient episodes of numbness and tingling in various parts of my body which can last a couple of days to a few weeks and occassional blurring of vision in recent years when I am extremely tired (being tired all the time is my usual state) or after unusual exercise or heat. Over the past year the fatigue seems to have become a permanent feature which can make me feel very low. I also have frequent UTIs ( 3-4 a year for the past couple of years) and very recently when I get the sensation to open my bowels it is very urgent and occassionally I haven’t quite made it to the bathroom in time. At the weekend I did a small bit of decorating a fire-surround and was almost immobile the following day. My right leg felt it alone had run a marathon and it took all my concentration and energy to limp along at a snail’s pace. This gradually got better and now four days later the leg is 90% back to normal.

My gp mentioned last year that I might have ms. I have not since returned to that gp. For years, I have thought myself that I might have ms but didn’t want a diagnosis as while I was well enough I couldn’t see what benefit to me there would be from a diagnosis. However over the past couple of years the fatigue, aches and pains, numbess, tingling, heaviness and other body sensations have I think contributed a lot to a very serious depression. A very good and long standing friend who says she has thought for years that I have ms but didn’t mention it is now trying to get me to go and be tested but am I right in saying that even if I am diagnosed there is nothing that I can take/do that will affect its progression? I am in quite a quandary about it all. Comments from other people’s experience would be very helpful - especially how having the diagnosis helped you.

Thank you

Mizzie

Hi Having the diagnosis helped me getting access to DMD to slow the progression, a lot has been written latly about the sooner you start treatment the better. Weather it’s helping or not , mentally I like the idea of fighting back. Gray

100 percent go with what Gray says, I am in limbo along with soooo many and suffering from day to day. If you have that chance of a DMD or any form of treatment to help you, then you have nothing to lose. Take care of your sen as unfortunately no one else will xxxx

Hi, medication may not slow the progression but can help with managing the symptoms which in turn could increase your quality of life, nothing ventured, nothing gained. for me a diagnosis gave me answers! What you do with the information is then an informed choice. Good luck with Whatever you decide. Pauline

Mizzie, We are all different with our approach to our health and lifestyles, you have managed this far without needing DMDs who’s to say if you had taken them things would have been different. Had you taken them people would have been saying the DMDs worked! Having said that maybe now is the time to go back to your GP and ask for a referral to a Neurologist. Tell him your suspicions and that you would like tests to confirm or discount MS. If MS is confirmed you will be allocated an MS Nurse who you will be able to discuss things with. If you are given the option of taking DMDs she will be able to give you the information required to make that decision. Perhaps more importantly she will be able to advise on any other medication (symptomatic) that you may want to consider taking. You asked if having a diagnosis helped, I guess it does I just worry that sometimes people get bogged down with details, if someone is inclined to worry then too much information is going to overload them. You have managed the last thirty years without needing the help of Neurologists. I know someone who stopped working working twenty years ago due to a diagnosis and quite frankly she hasn’t had anything more than the odd numbness effect her so far. Good luck.

Thank you Gray, Manoon and Pauline. I hear what you’re saying about medication to help relieve the symptoms and as I have just started having these electric shock like pains in my neck and a little difficulty swallowing the notion that these may be more tolerable with medication is somewhat encouraging. However the thought of having my precious days filled with hospital appointments, mri scans, neurologist reports, more gp visits with monitoring and managing medication and I becoming a number in the system is very off putting for me. (I had urodynamic testing a few years ago for bladder problems and the through the course from referral, waiting for appointment, the test, waiting for results I had become I felt a different person - a patient in fact and I felt at the same time a fraud as there was no way I had the level of suffering that most people with ms experience. In fact at that time apart from the tiredness, numbness and bladder probs, I was fine.) I’ve always kind of accepted that it might come to this eventually but I wanted to hold it off it as long as possible, although I can see that ‘eventually’ might be getting close now. Then of course there is also the possibility that I have the mri and it is negative or inconclusive and so followed by more and more rounds of tests and with them my thoughts are very likely to become entirely preoccupied with the possibilities of a ‘new’ diseases (and my imagination fired by google) when in fact nothing will have really changed as I have lived with what I have lived with and naming it I don’t think it will change my experience of it. in any way that will be useful to me. However work - which I 've been doing part time for a number of years- has been a huge struggle especially over the last six months but with a number of years remaining on my mortgage stopping any time soon is not an option.

Lastly I must say how very glad I am that I found this forum where people with so much suffering in their lives reach out and help each other in such a genuine way. I hope that when I have learnt something useful to share it may be of help to others.

Many thanks :slight_smile:

.

I would pretty much support what everyone has said and I can fully understand your issues around all the testing, monitoring etc. The diagnosis of MS isnt a precise process with the testing tending to exclude other issues and when everything else is excluded the only remaining diagnosis is one of MS, There are some medications that your GP should be able to prescribe that can help, particularly with bladder problems, I take Oxybutulin which has really helped with control of the bladder (it doesnt totally remove the problem but it helps me manage it far better). With MS a lot of the time is spent on therapies to help mitigate the effects of MS and in so doing try to maintain the individuals quality of life, I have had Pyhsio, Speech Therapist, Bladder and Bowel clinics and I suppose they do help but the whole process I find to be quite draining. All in all it is a marathon rather than a sprint!

Good Luck

JC

Hi mizzieloom, I agree with the others - it’s a very personal decision. I, for instance, cannot stand not knowing, and am finding the delay impossible, so reading your post fills me with admiration for your ability to carry on without knowing. While no one else can tell you what is right for you, what i would be inclined to consider if I were you would be the possibility of being able to get more help at work or financially with a diagnosis. If you went to a neuro, with your symptoms I would think having an MRI would be a certainty, and if you have had MS all this time, it would be unlikely to be negative I would have thought. So if it is positive, then you know for certain, and are still in control of your choices, with a lot of extra possibilities for help. If it is negative, you know that it is not MS (in all likelihood) and you will still be able to decide whether you want to seek further tests or whether you decide to carry on as possible. Hope that helps, Leah :slight_smile:

It seems to me that certain strategies work well for a person for a while - maybe a long while - but then they can stop working so well, and then it is time to review. From what you say, while you were getting along fine that was one thing. Now that you feel that you are being pitched into a depression, that is quite another. It might be that the balance of what supports you and gives you what you need has simply shifted. And why not? What we need changes over time. If you feel that the time is now right for you to nail down what is the matter, then go for it. You will be the best judge of when the time is right for you.

Alison

Getting a diagnosis also helped me financially.

If you have critical illness cover on your mortgage you may be able to get it paid off completely.

ms is a payable condition.

This of course depends on your critical illness insurance cover and the company you are with.

Teresa.x