Hi everybody A week ago I went to see my Neurologist again, this is my forth appointment. I have in the past had an MRI of my brain and spine with contrast, I am aware that during my examinations I present signs of double vision and the babinski reflex. My symptoms have been weakness in my legs, numbness in my limbs, tremor, memory problems, balance issues and bowel and bladder incontinence. All my MRI scans have been clear. No Lesions. It had been a year since I saw my neurologist and during this time I fell pregnant and have birth to twins which arrived prematurely. During my pregnancy all my symptoms seemed to go away. Ruby after the birh they came back and I even had new symptoms. I felt wet when I was dry. I felt buzzing in both my legs, like a vibrating in my bones. My vision in my left eye became blurry. I had no feeling in my bowels so I didn’t feel the need to go to the toilet and by the time I realised I would sometimes of gone for a week. Muscle spasms. Anyway, I have been to see the Neuro and he carried out the same examination, discussed with me my new symptoms and even checked my balance. He ended the consult by saying and I quote ‘I believe you have Multiple Sclerosis, I will be sceduling another MRI and will follow this with a lumber puncture.’ I was in shock as even though I knew it was a possibility I didn’t expect the Neurologist to diagnose without evidence. I remember saying to him I don’t want a lumber puncture and I don’t want to have MS… Both of which I can’t do anything about I know, but I was in shock. Anyway, since my appointment I have wondered what he must of seen when he was examining me to make him so sure it is MS? Does anyway have any idea?
Shortly not Ruby (sorry)
Hi Lynsey, Strictly speaking, he hasn’t diagnosed. This can be very confusing (I was caught the same way), but: “I believe…” and: “I will be scheduling [more tests]” isn’t a diagnosis. It’s certainly not one any insurance company would recognize. So he’s not diagnosing without evidence. He’s simply saying what he believes, according to your symptoms (which is not unethical) and now wants to do tests to prove his belief. Actually, diagnosis on the basis of symptoms alone IS still allowed, but very, very rarely done these days. With the advent of MRI technology, not many neuros feel confident of making a diagnosis without MRI evidence. It is possible to be diagnosed without a lumbar puncture - I was, and so were several others here. I just said I didn’t want it. I think it probably delayed my diagnosis by about six months - but then again, one of my reasons for refusing was it isn’t always conclusive, so it could have come back negative, which would mean I’d had it for nothing, and was no further forward. So although it probably did delay my diagnosis, it might not have - we’ll never know. I don’t think your neuro has seen anything in particular that has changed his mind. I think he’s looking at the whole picture - episodic nature, better during pregnancy, definite new symptoms over time. These symptoms are all suggestive of MS, but don’t categorically prove it. I know you don’t want MS, but on the other hand, I’m sure you don’t want unexplained illness for years, either. It can sometimes be helpful to get answers, even if they’re not answers you would ever have wanted. Diagnosis would also pave the way for treatment - if you qualify - and if you have critical illness insurance, you might finally be able to claim on that as well. Tina x
Hi Lynsey My first relapse April last year,neuro said " I think it’s ms " I was shocked, so I said is that definite , he said no, let’s schedule a few more tests. 10 months later after, another MRI , lumper puncture, evok potential , ct scan, Endless bloods and 3 more neuro appointments, finally got DX . So sorry to say it seems to be a long and difficult process to get confirmation. Take care Gray
I’m sorry Lynsey, but I think that even though it’s not a firm diagnosis, he may have been preparing you for a dx. It’s quite common for pregnancy to alleviate MS symptons, and then for a relapse to occurr within 6 months of giving birth.
I was diagnosed before I had a LP (only had it for confirmation) by comparison of two MRIs, which showed an increase in the number of lesions. If he’s confident in diagnosing you on MRIs alone, there’s no reason you should have one, or you can simply refuse.
Take care hun,
Mags x
I am sorry that you have been landed with this bombshell. MS can be difficult to diagnose, as many people on this limboland board have good cause to know. But it isn’t always difficult, and sometimes neurologists have a pretty good idea what the matter is as soon as they have done a clinical exam and taken a history and have found both to be strongly suggestive of MS.
My suggestion would be to take things one step at a time. Don’t worry about the LP for now - you can cross that bridge when you come to it. Have the MRI, and see what that tells your neurologist. If he sees what he expects to see, that might well do for dx purposes.
In my own case, my history and symptoms had MS written all over them and the MRI did the deal for dx. The neurologist wanted to do an LP as well for completeness, but I understand that my dx would have been secure even without the LP.
You have had a horrible jolt, but at least that nasty surprise is over and done. You are quite right to not want MS, of course. If the neurologist’s hunch is right, that will be every sort of bad news - no question. But it won’t be the end of the world. Most of us manage to make good lives for ourselves, despite MS. People told me that 15 years ago, and I didn’t believe them, but they were right.
Good luck with it all.
Alison
Thank you all for your replies, they are all nice to read. I missed a significant detail in my original post. When I told him I didn’t want MS, the Neuro replied by saying, I wish I wasn’t telling you that, unfortunately all your symptoms indicate MS. Maybe I was to quick to assume he had diagnosed me, that’s how I took it. I will be more prepared next time I see him and ask more questions so I have my facts straight. Thanks again everyone. X
I’m wondering if we have the same neuro! Not in the Bristol area, are you?
'Cos I sort of thought I’d been diagnosed. Then very surprised to get a copy of my neuro’s letter to my GP, saying only that the diagnosis was one of probable RRMS - which to me seemed to me like backtracking, compared to how certain he’d seemed in the consultation.
I did go on to be formally diagnosed, but only about eight months later. I didn’t understand, at the time (because he never told me) how much evidence they have to collect before making a formal diagnosis. “All of this points to MS” just isn’t enough - they have to go on to prove it. MS is technically never 100% provable in any case - except at post mortem. But they do have a very high evidential threshold before it’s accepted as certain, for all practical purposes (including treatment, insurance claims etc.)
The diagnostic criteria they use are called the McDonald Criteria, if you ever wanted to look it up, but it can get quite technical. Among other things, they have to be sure whatever’s wrong with you is either recurring or ongoing (i.e. multiple), and couldn’t have stemmed from just a single, one-off attack.
Tina
So today I have been informed that my MRI scans were all normal. No lesions. I’m shocked, but also a little worried about myself… Two weeks ago I experienced complete hearing loss in my left ear, for a week. I saw my ENT doctor who couldn’t understand my hearing loss and told me to see my Neuro and mention the hearing loss as this could be related to my current complaint. I woke up one day unable to hear, then a week later my hearing returned. I am so pleased that my brain looks normal and I have nothing scary… But now I am concerned that I might be imagining all these problems. So much so that I might even speak to my doctor about mental health problems. Surely it can’t be normal to lose hearing, experience so many symptoms that mimic MS. It’s weird how it comes and goes and how I look and feel completely normal one day but horrendous the next. After the last meeting with my Neuro I was convinced I had MS, and as upset I was about it, I was sure they would see lesions and I we would move forward. Now however, I feel more upset as I could wake up tomorrow with temporary paralysis again, hearing loss again, vibrating in my body again… Any of my past problems and I would have no explanation for this. I just want to be able to say… I feel like this because… As you can probably tell I am totally confused and actually concerned. Waiting to hear from the Neuro about the next step, if any. At least for now I can see, hear, feel ok and have no complaints. Tomorrow may be a different story, and that frightens me.
I don’t know why it posted the above post anonymously
Hi, there is a thing called functional neurological syndrome and has been mentioned on here a few times. However the things that puzzles me is the positive babinski sign. Usually this and hyper reflexes indicate that something is wrong with the central nervous system. It is both impossible to imagine this or even fake them. Maybe you need to have a lumbar puncture.
Take Care
Moyna xxx