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Going crazy waiting for diagnosis

Hi,

I am 26 and having Ms symptoms. I’ve been told by 3 different doctors that they think this is Ms except for the doctor I need to confirm it… My neurologist who I’m having trouble with.

My first symptoms started October 2013 when I started having funny turns, a few days later I woke up with blurred vision in my left eye. When I went to the doctor they sent me to the eye infirmary who noticed nerve damage on my optic nerve. 5 days later I was hospitalised as I couldn’t move my neck, it was too stiff. I also lost sensation and slight feeling.

My First MRI scan came back clear and after 7 weeks of feeling awful… Lethargic, having blurred vision, memory loss, loss of feeling, I started feeling better again. Although my eye does still blur sometimes for just minutes, my neck is still bad and my feeling still isn’t 100%. But as my MRI was clear and I felt better I put all mention of Ms behind me. I was told by a private neurologist that this could have been a migraine ( even though I told her I have never suffered from a head ache )

4 months later the turns started again. This time new symptoms came with it along with the symptoms that never went. I was dropping things, I couldn’t grip, I couldn’t remember what I was talking about mid Sentance. I felt awful, lethargic, just generally ill and ’ not with it '. And a weak left arm. I also had problems with holding in when I needed a wee, i would suddenly need the toilet and would have to go straight away there and then… A lot! I had one accident in bed where I didn’t make it to the toilet as I could t hold in. I went back to my doctor ( who I will only ever go to if I’m desperate ) and she sent me back to my neurologist. My neurologist sent me for another MRI after telling me this time that it’s probably just a virus ( so its gone from a migraine to a virus ) I had my MRI scan, this time on my neck and brain as I was still having trouble with my neck. This time there was changes on my MRI- my neurologist told me he thinks this is just due to ageing ( there was 6 months between these two scans. Can you age that much in 6 months that there is visible damage on an MRI scan? ) again these symptoms lasted around 7 weeks. Once I started feeling better again ( my neck, and blurred vision never went back to normal ) I carried on as normal and put the chance of Ms behind me.

just before my 26 birthday I had the symptoms coming on again and I knew exactly what I was heading for. This time round things got worse. I had all the usual symptoms but this time I was extremely lethargic, my left hand wouldn’t function properly, I struggled to hold a pen, I found it hard to swallow food, I had severe Weakness in my left arm and leg, I had drop foot and still have, my balance was awful, when ever I stood up to walk I had to stop and think which was bizarre. I knew what I had to do to walk, but I just couldn’t do it. My leg just wouldn’t go until about a minute after Id stand up. Again my grip was terrible. I felt awful, I also lost over a stone in just 3 weeks. This was a scary time! Again feeling desperate for help I went to my doctor to see if there could be any other course for this. I have a vitamin d deficiency so was asking if this could be the cause. The gp said its not vitamin d, it sounds like Ms, and sent me back to my neurologist. I was greeted my him saying ’ what do you want now '. Followed by him telling me that all this was in my head. Luckily I had my mom there with me who is a consultant physcologiist and she told him she had been observing me without me knowing and she knows it’s not in my head. He then done his usual examination and told me my left leg is not functioning properly… He sent me for a lumbar MRI and some electric tests in my leg ( I am still waiting for these results ). He then told me that he knows these tests will come back clear and if they do that I should see another neurologist as he may of missed something or jumped to conclusions as he has seen me for so long. He has put me on a register so that I do have the flu jab.

At at the minute I feel okay other then my left leg and neck. But this is driving me crazy!!! Is this in my head or have other people had these problems? Help!!!

Hi,

If it’s any consolation, your neurologist is (probably) not being obtuse or deliberately awkward.

I learnt a long time ago (from my own route to diagnosis) that there can be a heck of a gap between what they “think it is”, and what they can prove, so what the other three doctors “think” is neither here nor there, unless the evidence backs it up - which, at the moment, it appears it doesn’t.

Even accepting the changes in your brain in the course of just six months - which do seem a little suspicious - ONE lot of changes is not usually sufficient for a confirmed diagnosis.

One of the essential characteristics for an MS diagnosis is it must be shown the problem is either repeated or ongoing, and couldn’t have been a one-off. The clue’s in the name: “multiple”. So even if there are lesions that weren’t there six months ago, it’s not proof, by itself, that there’s been more than one attack, as all might have appeared at the same time, as the result of a single episode.

It is quite common for an MS diagnosis to be long and difficult, as it’s one of the hardest diseases to diagnose, with no “yes or no” test. Instead, it’s rather like a jigsaw, and have you got enough pieces to be SURE what the picture is, or do you just think you know, but some pieces seem to be missing, or not fit at all?

Despite initially suggesting it was “in your head”, your neurologist has admitted your leg is not functioning properly, and, if the latest tests come back normal, as expected, has offered to refer you for a second opinion, in case there’s anything he’s missed. This seems a reasonable course of action.

Obviously, if they don’t come back normal, that’s a different game again, and he’ll have to think carefully about what the implications are.

But it’s very common not to have definite answers for a long time.

My diagnosis took about eight months from initially seeing a neurologist - and that was with a clearly abnormal MRI from the start.

If I consider how long from the start of any symptoms at all, I think we’re probably talking years, as my earliest symptoms were somewhat trivial, and not very obviously neurological, so I don’t think either I or my doctors had any particular reason to suspect anything sinister. Looking back, I can see it was probably the start of what we now know to be MS, but there wouldn’t have been anything to make a normal person suspect that.

So did I take eight months to be diagnosed (from first seeing a neurologist), or between 10 and 20 years (from first going to the doctor about anything)?

I’m not suggesting 10 years plus will be the case for you. But do bear in mind another eight months, even after clear evidence. Your evidence, it seems, is a little less clear. All you can do is try to be patient and go with the flow. Because it’s such a tricky diagnosis, and the consequences of getting it wrong could be pretty serious (not only given wrong drugs, but missing out on the right ones), the evidential threshold is very high.

Tina

x

Hi Tina,

thanks for for your reply. I’m just dreading my the next episode as my symptoms have flared up again so I assume I’m heading for another episode going from experience from past ones. Being a full time working, single mom an episode Knocks me back a lot so I guess I’m trying to jump ahead and find answers before it happens again.

Its such a long, frustrating, mentally and physically draining wait. I’m hoping these results come in the next few days. I will only go and see another neurologist for a second opinion if I have a really bad flare up again, just hoping I won’t need to! X