I have recently been referred to a Neuro due to various symptoms I’ve experienced over the last few years;
3 years ago - trapped nerve feeling in left arm, arm was difficult to move for several days and then burning/tingling lasted for around 6 weeks. My left arm has felt significantly weaker than the right ever since and my left hand sometimes doesn’t even feel like it belongs to me. I was referred to Neuro who said my reflexes were unusual and requested a c-spine MRI which showed no ‘structural issues’ which would cause a trapped nerve and was told to ride it out and it would right itself.
A few months later the urine infection symptoms started (full bladder feeling/slight pain, urgency, urinary frequency and a feeling that I wasn’t emptying my bladder fully), this happened every 2-3 months, no infection was present in urine samples but my doctor just prescribed anti-biotics anyway. Due to the frequency of the symptoms I was eventually referred to Urology who couldn’t find any reason for my symptoms and referred me back to GP. GP said it might just be ‘one of those unexplained things’ that I would just have to deal with.
Around a year later I started to have bowel issues and lower abdominal pain. At first it was the diarrhea I noticed as this was causing problems with work due to me being unable to leave the house for fear of an accident. I was referred to Gastro with suspected Ulcerative Colitis but after a colonoscopy I was given the all clear and referred back to GP. I was given Colofac to stop the diarrhea and was left to get on with it.
Over the last 12 months, along with all the above symptoms still being present on and off, I am now experiencing other more unusual symptoms; double vision, eye pain, headaches, fatigue, burning pain in calfs and feet and a cold sensation down my back and forearms. My optician has confirmed that within the last year my eyesight has deteriorated significantly, never had any problems or prescription previously, but now my eyes are completely uncoordinated and weak. This has resulted in my referral to Neuro.
The possibility of MS doesn’t scare me as I know people who have it and live normal lives. To be honest after all the negative test results over the last few years I would actually be happy if they turned round and said ‘you have MS’ because at least then I would have an answer and know why I feel they way I do. So I suppose my worry now is that I go through all the tests and still come out with negative results and another unexplained verdict.
I know we have all these fancy tests now to help diagnose MS (I also know that although these tests help the diagnostic process they are not definitive and people can still have MS with negative tests results). What I’m wondering is how they diagnosed MS before all these fancy tests came about? Is it the insurance companies who require all these tests to gain what they term a definite diagnosis of MS before they will pay out because maybe in the past they have had to pay out for MS without medical proof that there is a problem?
Hello Anon x Your story resonates with me a lot! I’m not diagnosed and am still going throught tests and my worst fear is that I’ll still be left with no answers as many others are.
I don’t think the diagnostic criteria are anything to do with insurance - it’s probably more due to the fact that they have more advanced drugs these days that help with MS - in particular RRMS. These drugs are pretty ‘heavy’ stuff so they do need a more definite diagnostic.
Apparently in the past - before MRI’s - MS was diagnosed on clinical symptoms and signs and they even used a ‘hot bath’ test as MS tends to worsen with heat!
I’m still of the ‘if it looks like a duck, waddles like a duck & quacks like a duck’ (or summat like that!!) mindset as I feel that there is too much reliance on the MRI’s and poor peeps who are suffering all the symptoms, have all the physical signs but not achieving the MRI based criteria are left in this awful limbo x
Maybe they need to acknowledge this and define it better with a ‘label’ of some sort for people (and there are many of them!) who find themselves in this position and all other causes have been ruled out.
I don’t know - my thoughts change often on this xxxxxjenxxx
Hi Anon, sorry to hear you’ve had such a bad time… and let’s hope the tests to show something. It is a relief when you have been suffering such disabling symptoms to be told it is MS (relief mixed with shock… a strange combination)… but it is at least good to know what is causing it.
I think they used to go just on symptoms and if they were very obvious… ie not able to walk or very obvious relapses, they could dx. I remember as a child in the 1950’s and 60’s my mother had a friend who had MS. Now I realise she had RRMS as she had relapses and when older she used a wheelchair all the time and must have had SPMS. But then it was just called MS.
This of course meant that many many people went un-dx. I always notice when I read novels written many years ago that there is often a character who is an ‘invalid’. No dx of anything in particular. Must have been many people like this with MS who simply weren’t dx.
I don’t think it’s the insurance companies. Obviously technology has improved and neuro’s now have MRI and LP to help dx, although as you say it’s still not easy to dx especially if these don’t show anything.
I have not been fully diagnosed yet but I know that I have MS. I have ten lesions. The neuro seems very reticent to come out with a diagnosis. I have a feeling that this has something to do with getting critical health insurance. I have applied and they have said that I can reapply when the results of my current investigation are known. I think it has all to do with money and budgets with the hospitals. I have another MRI at the end of this month to see if there has been any development. I’m very confused too. I want a definitive diagnosis so that I can get on with living.
Hi Adrian, I think it’s more likely to be that for a dx of MS, lesions must be separated in space and time. That means they must be in different areas of the brain (space) and to have appeared at different times.
The neuro is doing another MRI to see if more lesions have appeared since your previous MRI. This is normal practice and the neuro would be unlikely to dx MS unless he/she was absolutely certain.
Hope you get some news after the MRI. I know how frustrating it can be.
Thanks Pat. I do realise that the first MRI is just a snapshot in time. He is inferring that he will only put me on dmds if there is a change. I had my first attack 4 and a half years ago. I had optic neuritis and I lost a stone in weight over one week. I went to the opticians and he referred me immediately to A&E. I saw an opthalmologist. They spent two weeks doing many different tests which included 17 seperate blood tests. The closest they got to looking at MS was the glib remark, “It might be MS but we don’t think it’s that.” They didn’t send me for an MRI. They didn’t refer me to a neurologist. After two weeks they told me they didn’t know what it was. They inferred that it might be HIV and I was left to go on my merry way. Fortunately my symptoms cleared up after a couple of months and I managed to get on with my life. Since then I have had two attacks. I had a really horrible one at the beginning of this year where I had about fifteen symptoms which progressively got worse and worse. It was extremely frightening, as most people here will full well know. I got an emergency MRI as I insisted on having one. The thing that makes me really angry is that the Indian Doctor in my initial consultation was trimming his beard. At the time I was so strung out that I didn’t think to complain.
The point, I’m trying to make, is that I could have been diagnosed 4 and a half years ago and I could have been put on DMDs much earlier and this might have stabalised my condition. My friend, who has had MS for 12 years was on Beta interferon for 2 years and her’s has stabalised. So, I’m a bit fed up that he is saying that I won’t be put on DMDs if the MRI has not changed. So if anyone else is in the situation I was, please insist on having an MRI.
Have a good weekend. Sorry for hijacking your thread anon.
I’ve heard that they used to do the hot bath test. If you have weird neuro stuff going on, and you have a hot bath and steep in it for long enough to raise your core temperature, and all the bits that are the matter with you suddenly get worse until your core temp returns to normal, that can be a sign that MS is a possibility. For all I know, it can be an indicator of all sorts of other things too, though, so don’t take that at face value. The fact that they don’t seem to do it any more tells its own story about how reliable it was, I guess!