Clear MRI, is this all in my head? Feel like I should give up. Maybe there's nothing wrong?

New diagnosis and before diagnosis
1

Hi there,

I’ve recently been speaking with my GP about a variety of symptoms over the years that for the most part, I’ve put off as part of life, IBS, depression etc. But more recently I got a blind spot in my eye and went to A&E, this led me down a rabbit hole of MS, and a lot of previous things I’d ignored maybe fit into the MS symptoms. It made me look at other symptoms I’ve experienced but just ignored as normal aging aches and pains.

I recently had a MRI scan and the results came back today as all clear. I feel deflated and upset in a messed up way. I know its a good result to get but now I feel like, have I just imagined this all? Should I give up thinking it’s MS? I feel back at square one but also a fraud? What’s wrong with me? What do I do now?

I hope that makes sense.

If it’s okay, I’m going to paste what I shared with my GP below, if someone has time to read it over, please could you let me know if you think I’m over reacting or I dunno… I don’t know, I feel really stupid and lost.

I’m female and 34 years old. I’ve put in a drop down as it’s quite long. If this is the wrong place to post this, my apologies.

History of symptoms

The blind spot prompted me to revaluate symptoms I’ve had over years, and I believe M.S is a gradual decline over a long period. Relapses can be bought on by stress or periods of sickness. The week before last (March 2024), I was very sick. It was just a common cold, but I was in bed with normal cold symptoms for about four days. This might possibly be relevant to why a blind spot suddenly occurred perhaps? I feel I am in the middle of the age range of when you might be diagnosed with M.S and women seem to get it more than men?

  • Blind spot. This was new. Just in my left eye, a fuzzy white blind spot, shaped like a crescent moon. It went after an hour. However, I do have black fuzzy lines in my vision all the time. They don’t clear from blinking or rinsing my eyes. These are not floaters.

  • Fatigue. I am often very tired, physically, after doing nothing at all. I’ll sleep often, longer, and nap during the day. It will be tiring to do basic household tasks. After a full nights sleep I’ll still feel tired and exhausted. – This has been previously attributed to depression, bad diet, bad sleep habits etc.

  • Depression & anxiety. I have long term depression and anxiety. – These have been a very long-term issue and I don’t think can be fully attributed to potential M.S diagnosis.

  • Stiff muscles. I often become incredibly stiff, along my back, my shoulders and arms, and my legs, if I’ve sat/laid in one position for too long. – I’ve historically attributed this to getting older and not being very fit.

  • Pins & needles. I randomly get pins and needles. Most often in my arms and hands. I don’t seem to be sitting in an awkward position or pinching nerves etc. Sometimes its just whilst I’m laying in bed in a normal side on position.

  • Bowel issues. I almost always now will have some level of diarrhoea. Once or twice, I’ve gone without realising it, where I was sitting. Which is extremely embarrassing. I’ve put this down to IBS, and spoken with doctors about this, who did blood test etc found nothing and concluded its likely IBS. I have tried an elimination diet but never really found a specific trigger, and decided it was probably triggered by stress.

  • Urine issues. I have to pee constantly and often urgently. I’ll wake in the night to pee. Sometimes I’ll pee and then 2 minutes later, need to pee again. It’s often not a large amount and if it’s the second time, its usually just a dribble. I spoke to the doctors awhile ago who diabetes blood tests which showed nothing and I’ve kind of just accepted I have a rubbish bladder.

  • Brain fog/word issues/bad concentration. Often, I’ll struggle to find the words for something, or lose my train of thought whilst speaking and drift off. I’ve just attributed this to being an idiot.

  • Bad memory. I have a terrible memory, I spoke with my doctors whilst I was at university about this, I was upset where I’d have days that I’d struggle to remember what I’d done that day. This was attributed to depression.

  • Vertigo. I’ve been feeling dizzy more and more. Sometimes for a day, sometimes just momentarily.

  • Sensitive skin. Often, on my scalp, forehead and the sides of my hands the skin will be painful to touch, sensitive, tingly. Theres no real reason or cause for this, it just happens occasionally.

  • Lost of taste/change in taste. A lot of food as changed taste, sweet things to unpleasant tastes, this has lasted for a few months.

  • Numb foot. For a few days I lost feeling in my left foot. No injury or any pain or reason for it, it was just numb, couldn’t feel if something was touching it.

Some of these symptoms have been over a period of years, they’ve come and gone, and once I’ve spoken to a doctor, who reaches a logical and sensible diagnosis, I just shrug them off and continue with life. Things like vertigo, taste change, blind spot are more recent.

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Hi,

This sounds really frustrating.

You’re not a fraud, or stupid. You have symptoms and you are trying to get to the bottom of it, which is a sensible thing to do. It’s just difficult to work it out - what is causing the problems, whether these symptoms are linked or have separate causes.

You say you had an MRI. Was that ordered by your GP, or a neurologist? And was it a brain MRI, or brain & spinal cord? I’d imagine a completely clear MRI scan does make MS rather unlikely, but you need a doctor to assess that.

One of the problems with MS is that most of the symptoms are shared with a lot of other illnesses. You are right that MS is more common in women, and can come on aged around 20-50… However, the majority of 34 year old women do not have MS.

You still need to get to the bottom of your symptoms, perhaps starting with the ones causing you the most problems.

It is up to your GPs, really, to do their best to help you navigate this. They should be used to the fact that it often takes several attempts to get to a diagnosis. What does your GP think the next steps are?

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I can understand how you feel deflated. Sometimes even bad news feels less unsatisfactory than no news. Living with low-grade uncertainty is painful. Of course, an MS dx is not a good remedy for that: it is the start of a lifetime of weapons-grade uncertainty, so the relief of a firm dx is short-lived indeed, but you know all that, as you have said.

When people have reached an impasse, I sometimes think it’s a good plan to step back for a bit. It’s hard and tiring work, battling through the medical system, and there’s something to be said for waiting for something new (and potentially attention-grabbing for the medics) to happen before entering the fray again. But that’s a very personal decision, of course.

A good heart-to-heart with the GP sounds like a good idea.

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I am getting the impression even though you say you are “stupid” someone has tried to validate this? You are not!!! You shouldn’t feel bad because you know something is off with your body. If anything it is really important your body is telling you things aren’t working so well. You know your body better than anyone so I would suggest you focus on a few things from your list and explain to your doctor why you feel the way you do. Don’t devalue your health by thinking your depression is the reason. I think anyone with your health concerns would be feeling low. Also, try to remember ms was suggested due to your symptoms. Would it still be if the doctor didn’t mention it atall? Would you be feeling so bad with yourself. Sending you positive thoughts and prayers x

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@scatterkiwi you may we’ll have done so already but if I were in your shoes I Would be getting B12 level checked. Your certainly not stupid.