Potential MS

New diagnosis and before diagnosis
1

Hi guys,

I’m going out on a limb a little bit coming here, but I’ve seen my own GP, a private one, and now changed my NHS GP and we’re starting from where they left off.

Initially, my old NHS GP fobbed me off with ‘anxiety’. I went to him 18 months ago after I’d had a really strange incident at work one night. In May 2017, I was sat at my desk waiting to go home. Suddenly almost a ‘wave’ washed over my head, I suddenly felt dizzy/woozy, really unbalanced and my vision became really blurry. I stumbled to the car to meet my wife and I was so panicked, thought I was experiencing stroke symptoms or something.

Anyway, these symptoms have been with me 24/7 ever since - dizziness, unbalanced and woozy/brain-fog feeling has been ever-present for almost 2 years. At times, it worse and I feel like I can’t focus or concentrate, and my vision is really blurry and sensitive to light, some times I can manage. But over the past few months my eyes have begun to almost… quiver or ‘shake’ from side to side. I find it hard to focus a lot; lots of involuntary movement. Nothing that’s crippling but it can be very unsettling.

I had to take a couple of weeks off September 2017 as I thought it may be an eyesight issue, but eye tests confirmed my eye sight was still strong and I was only slightly long-sighted in 1 eye.

Following January, after pushing my GP that it wasn’t anxiety, I had an MRI. This showed nothing ‘of note’, and the neurologist told me I had migraines. Laziest diagnosis I’ve ever experienced.

Fast forward 6 months, I’m having really bad gastro issues, bloating, wind, etc. I’ve had to change my diet drastically. By September 2018, I’d lost 4 stone, was having awful breathing issues (feels like an abdominal/respiratory weakness), had vertigo, memory problems, tingling/itching in hands and feet, sleep apnoea-like symptoms, muscle weakness in arms and legs, problems concentrating, amongst many other things. Many of these come and go, the 2 constant are gastro issues,

I’ve had all manner of tests: 2xspirometry, 2 chest x-rays, heart echo, CT scan (abdo, chest, neck), manometry, upper GI. All have been clear.

As I said, my old GP was adamant it was anxiety, so I went to see a private GP / specialist. He was really angry about that ‘diagnosis’ and he himself is still adamant that I’m suffering what he refers to as ‘global autoimmune disorder’; he simply can’t pinpoint any particular ones. Also, none of the treatment we’ve tried has worked, and none of the bloods or tests have really supported this.

So my new NHS GP, asked me what my concerns were about this - I said that I’m looking at MS, or some sort of conversion disorder. He agreed, and said that that’s the route we’re probably going down now.

And that’s why I’m here! I’m just keen to know if any of the above is familiar to anybody?

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DaveTy I sorry to say that MS is as individual for symptoms as any one else. Some have very few symptoms others many a lot more. There are quite a few autoimmune diseases one being MS, that’s the most common. Your neurologist may ask for a head and spine MRI as sometimes you have legions on your spine and not your head also he may ask for a lumber puncture and blood test there is a few more tests that you may have but as MS has lots of different symptoms they can be the same as other illnesses and they need to do a lot of tests to whittle down until they’re left with one thing and then they can hopefully get treated. It can take a while to find out what you have. The doctor may be right about anxiety you are worried because you have these symptoms and there not going away, if you read on this site you may find that you have a lot in common with people here. Another thing have you asked about being coeliac, I lost seven and half stone and had a lot of bowel issues before they found out what it was while I was in hospital for a week I have been on the gluten free diet for two years now and I am fine. I am sorry I can’t help any more but we don’t mind people having a rant and rage here. lol Kay

3

Ah, that’s no problem Kayrb, I appreciate your response. The cursory reading I’ve done, I can see that symptoms are as individual as the people themselves. Which would explain why it take so long to diagnose.

I should just be glad that this is now being investigated, as it’s been 2 years of misery for the most part, with new symptoms all the time!

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Hello Dave

As Kay said, no two people experience exactly the same kind of MS, it’s a bugger of a disease because the symptoms often seem so random.

Having said that, you’ve had a clear MRI early on, which makes MS a bit less likely. Was that just the brain, or brain plus spine? If it was both, then any symptoms that you had at that time would have shown up as demyelinating lesions then.

As far as I know, while vertigo, eye problems, cognitive issues, tingling, itching and muscle weakness can all be associated with MS, the gastric symptoms are pretty uncommon (as far as I know).

Kay is right to suggest coeliac disease. That is all about the stomach and gastrointestinal system. Again it’s an autoimmune disease. The problem with coeliac is that your stomach cannot cope with gluten and this makes it impossible to absorb nutrients from food. You can get horrible stomach pains, diarrhoea, constipation, severe fatigue and anaemia. In addition, neurological issues can result from coeliac. Have a look at About coeliac disease - Coeliac UK

Saying this shouldn’t make you think, ‘aha, it’s coeliac, I’ll stop eating gluten’. Just that you could ask your GP for a test for coeliac disease. You shouldn’t remove gluten from your diet until and unless you are diagnosed. The tests won’t work if you’re not eating gluten. (Obviously you may have already had a blood test and know it’s not coeliac.)

When you say you’re looking at MS or a conversion disorder, have you considered Functional Neurological Disorder (FND)? That is very similar to a conversion disorder, but with less emphasis on psychological factors. Have a look at What Is FND - FND Hope International

I do hope you find a diagnosis, it sounds like you’ve lived in a horrible anxious situation for the last couple of years.

Sue

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Hi Sue,

Thanks for your response!

When I had the MRI last January it was head only. I’ve long suspected some form of nerve issues/damage. As I also have atrial fibrillation, and that is very much vagally irritated afib.

The gastric problems have really been hard to pin down. My scope, manometry and acid tests have all show nothing. I haven’t had a coeliac test as yet, but I’ve been pretty much gluten, wheat and dairy free for around 6 months. I’ve gradually cut more and more out of my diet and have also been on omeprazole (which I’ve never been happy about taking, to be honest) but had little relief. Taking those allergens out of my diet has certainly be helpful, but not as much as it should have been.

Thank you, though, I’d not heard of or considered FND, but I will certainly look into it. I was leaning more towards conversion disorder,or something to that effect (more so than MS), simply because my sister ‘came down’ with this herself 5-6 years ago. Her symptoms have been more ‘crippling’ than mine have, i.e. she was basically wheel-chair bound at one point but I’m concerned I may be heading that way myself.

Recently, I’ve had numbness, increased itching/tingling, and I’ve noticed some slurred speech and trouble getting my words out.

Anyway, I’ve a referral to General Medicine at the hospital I work at, to see if there’s anything my doctors have missed. Failing that, I’m not sure what we’ll do next!

Thanks for your advice!

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So the general medicine referral ended in shambles, as the Dr I was supposed to see was on holiday. I saw a clinical pharmacology reg who said a lot of my symptoms sounded like chronic fatigue syndrome.

When I asked if that would explain my main issue (my breathing), he said ‘probably not’, and that was that. Said to have a bunch of bloods done and come back in 2 months.

I’ve now been suffering various symptoms on and off for almost 2 years and they’re only getting increasingly worse, yet these people wonder why I turned to private doctors.

I went as far as paying for a private MRI of three areas last Thursday: brain, cervical spine and thoracic spine. Should get the results back late this week, early next week. If nothing else, it’ll rule MS out and I can take that to my new GP to kick something else into action (i.e. FND or something of that ilk).

As of right now, my breathing issues have worsened through the week, and I have a few new symptoms that have developed since last I posted, including tremors in my arms and legs, increased weakness and and my abdominal muscles feel as if they have completely given up the ghost.

I’m also finding that my throat keeps on ‘catching’ when I talk and I can’t speak and sort of have to clear my throat to be able to start talking again. This may not be MS, and I may well have more of an indication this week, but it’s something similar for sure.

Whatever this is, I’m really at a loose end and struggling badly. Almost 2 months back at work now, after 4 months off sick and I feel another spell off sick is incoming soon.

Dave T

PS. I also should point out - the reg that I saw a couple of weeks back did a coeliac test, so that’s a start.