How to Approach MS with my Dr??

New diagnosis and before diagnosis
1

Hi there

I’m really struggling with my health, and have had many inconclusive tests over the years. I feel like my symptoms fit with MS, but I’m not sure how to raise it with my Dr? I’m hoping that if I start at the beginning, and share my story, some of you might be kind enough to share your thoughts or advice?

I’m 39 years old, and autsitic. Back in 2008, I had a nasty fall in the bathroom, which resulted in concussion and severe whiplash. The whiplash resolved, and I didn’t have any more troubles until 2010. One day, I had to travel on a stuffy, warm train, and when I got home I suddenly felt weak down my right side, and could no longer stand up. My dad called an ambulance because the right side of my face had dropped, and he thought I was having a stroke. After a couple of blood tests, and a chat with a neurologist, I was told it was hemiplegic migraine, and sent away. They could never explain I didn’t experience head pain at the same time.

These episodes continued for a couple of weeks, and I was eventually hospitalised for 10 days while they did more tests. During my time there, my vision went blurry in both eyes, but no cause could be found. My CT was clear. They said it was migraine, but said if it happened again, go back and have a lumbar puncture. Well, it did happen again, a few weeks later, and they refused to do the LP, and just gave me more medication.

The episodes eventually passed, but in 2011, I started suddenly struggling with severe constipation, to the point of blacking out on the toilet. They told me IBS and gave me laxatives.

In 2012, I started having muscle spasms in my neck, which caused sever headaches. In the last 10 years, I’ve seen 5 physios, and tried at least 8 different medications. Naproxen is the most effective, but without it, my back and neck muscles are constantly right, stiff, and painful, and I have daily headaches.

In the last 10 years I’ve also had periods of severe fatigue and brain fog, that could only ever be explained by slightly low vitamin d levels. The constipation also went away, but about 3 years ago, I started with chronic diarrhoea and incontinence. A colonoscopy and CT found nothing, and I was told it was “probably SIBO” and to “eat more oats”.

The diarrhea eventually stopped happening, after I’d convinced myself that I must be lactose intolerant, so stopped eating it.

Then, in September last year, I caught COVID, and it hit me really hard. I recovered after 2 weeks, but then suddenly had crippling pain in my ribcage. A&E said it was pleurisy and costochondritis. For the next few months, I had continuous chest infections and rib pain.

Then finally, in early September, I suddenly lost my appetite, and started going off food. I realised It’s been slowing down on eating because I was struggling more and more to swallow. Every time I ate, it felt like it just stopped in my throat, like my digestive system wasn’t moving. I started vomitting most mornings, and was constantly nauseous. I kept getting hiccups, and regurgitating food. I lost about a stone while I was waiting for a gastro referral. My bloods showed high WBC, but nothing else. My Ultrasound was clear. My Gastroscopy showed nothing. The only thing I haven’t had yet is the results of the biopsy from the gastroscopy, but I’m expecting that to be clear.

I just feel like such a fraud right now. All of these things have been put down to stress, anxiety, and depression. I feel like the Drs are rolling their eyes at me for wasting their time. I DO suffer with depression and anxiety. But I know my own body. And it’s different. It feels different.

If you’ve read this far, thank you. I’m just very tired, and not sure what to do next.

2

Goodness, you do have a lot going on. All those tests must be exhausting in themselves, and frustrating, too, when they don’t seem to reveal any sort of pattern that the medics recognise.

I’m afraid that digestive distress is generally not taken terribly seriously by the medics once any obvious organic cause has been ruled out. As we all know, the brain and the gut are intimately acquainted in terms of enmeshed systems and feedback loops, but because they are complex and so poorly understood, medical advice tends to be vague and not particularly helpful.

Some of the things you mention will be familiar to many of us with MS, but some other things not so much, and I really don’t know what to suggest in terms of how to proceed. Personally, when a person isn’t really getting anywhere, I suggest stepping back and waiting to see what, if any, new problems emerge. If something new and clear and plan happens that is more strongly suggestive of this or that diagnosis, that is the kind of thing that can get the ball rolling again. When investigations have stalled, as they seem to have done in your case, more or less, this can be a reasonable approach. I know you want to find out what is the matter. But sometimes time is the best diagnostician, and if you are weary of medics, this might be a good time for some watchful waiting.

3

I’m sorry you feel frustrated and like a hypochondriac. I too have felt the same as my symptoms are very varied and intermittent.

I have been on anti-depressants for years but when I went to my GP and laid out my symptoms he took me seriously and I felt listened to.

Might be worth being honest with your GP but means you have to listen to them too. They won’t run tests unless they are indicated.

In the meantime I’d try to be kind to yourself and look after yourself. I’m trying to do something nice for myself every week, whether that be a walk in nature or a new book.

Hope you start feeling better soon x

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