Last reply 1 year ago
I might have MS but yet to be confirmed?

Since 2014 I’ve had a feeling that there was something not quite right with me. To get a Dr to listen to you these days and refer you to a consultant unless you pay to go private is very difficult. I have suffered with migraines most of my life and it’s taken over my life… but over the last couple of years the fatigue and the feeling of heavy limbs and aching muscles and joints have got really bad.

I have good days and bad days, at times I feel Ike I have been walking in water for hours on end and my legs are aching so much I’ve got no energy. Some days I will spend most of the day laying doe because I just don’t have the energy to do anything. The worst part of all this for me. I look a picture of health. But I feel like crap. I’m acing from head to toe. Every single miscible and bone ache so much at times I could literally cry.

I’m going to Neurophysiology on Tuesday and having my MRI brain scan on Wednesday which I’m really scared about becaus of what they might find. My head is constantly pulsating and I’ve had 34 migraines since the 28 March which I’ve recorded with an awesome little app on my phone. Some have been moderate and mild. But 68% of them have been severe migraines. I have started having cognitive problems with thinking and performing simple tasks. Recently I’ve experienced heavy hands like I’m holding weights in my hands. And the feeling of though my hands have gone dead. That feeling when you have woken up with your arm hangining out of bed and your arm is dead. There is also the case of sleep paralysis which happens now and then which is frightening as hell. Your brain is awake but your body isn’t awake.

I haven’t been officially diagnosed yet because my return appointment isn’t until July which I thought was rather long.

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1 year ago

Hi @cymromi and welcome. Yes, I agree, you might have MS, but you may also not have MS.

And, yes, unfortunately in this country, we get what we pay for. If we can afford to go private, or have private health insurance, we will be well looked after. If we only have the NHS as an option, then we have to kick and scream (politely) to receive an acceptable level of service.

As for your symptoms, the cause should be a little clearer once the results of your MRI are to hand. There’s little point in worrying about the results of the MRI as this won’t change a thing. There really is no point in worrying about things that may never happen as this could lead to a life full of worry.

Our bodies, especially our brains are very complicated, so your symptoms could be caused by MS. But, the symptoms also present in various other conditions. And, it’s the Neuro’s job to try and sort out this conundrum.

Try and be patient. I’m sure your appointment will be brought forward, if necessary. In the meantime, you need to try and relax. Your brain is adverse to stress and will produce chemicals which are detrimental to your Central Nervous System (CNS). So, try a bit of pampering to make yourself feel better.

Sorry I can’t be more helpful.

1 year ago

@cymromi I’m always going to advice on diet and lifestyle. What is your diet like? How do you feel after certain food and drink? Bloated, gassy, lethargic, fine? Are you stressed? There are lots of relaxation/meditation apps that are great. Do you exercise? I do yoga everyday even with fatigue and just take it easy and when I have more energy I go for it.

Your body is clearly fighting infection and by filling it with good things – veggies, water, good quality supplements, fresh air and happy thoughts you’re helping it heal itself instead of constantly battling.

I hope that helps and I hope you get the answers you want.

1 year ago

Vicki no offence but I’m not fighting an infection. I was diagnosed with FMS Fibromyalgia in 2005, and 5 years ago CFS Chronic Fatigue Syndrome. But these can be misdiagnosed and it could have been MS all along and not the other two diagnoses. I have a healthy diet, I don’t drink and smoke. But over the last two years I’ve had cognitive problems that are getting worse.

FMS and CFS can be and has been in the past been misdiagnosed when it should have been diagnosed as MS. The similarity between the two can be be misdiagnosed.

1 year ago

Hi @cymromi, sounds like such a tough period over the last 12 years or so. Haven’t you had an MRI as part of inverstigations? It’s horrible that you’ve been left floundering; that’s why you need to think of your Weds MRI as a pinnacle point. Your journey needs a particular direction, and a positive diagnosis whatever that might be, will get you started. I feel fortunate to live in London, because my experience along with others I know, has been a rapid service from onset to diagnosis. Its very unsettling to read about how the services around diagnosis vary so widely throughout the UK. Anyway, all the best for your appointments, keep us posted with updates!

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