Worried you have MS? - Multiple Sclerosis Breaking it down podcast

It’s estimated that 130,000 people in the UK have multiple sclerosis. Every week around 130 more people are diagnosed. Are you worried that your symptoms might be MS? Have you looked MS up on the internet and read about symptoms that sound like the ones you’re experiencing? Or perhaps someone in your family may have MS and you are concerned that you may also get it.
In this podcast, we chat about what you should do if you are worried that you might have MS, as well as what your next steps could be. Although don’t turn off if you already have a diagnosis, as we’re also sharing an interesting personal story from Dr Daniel Matterson, better known as @the.ms.doctor on Instagram. He chats to us about his diagnosis and shares some tips about what you can do if you are worried you have MS.
Episode notes
- Worried you have MS?: www.mstrust.org.uk//informati...
- MS Trust what is MS?: www.mstrust.org.uk/about-ms/w...
- MS trust how is MS diagnosed?: www.mstrust.org.uk/about-ms/w...
- MS Trust newly diagnosed: www.mstrust.org.uk/about-ms/n...
- MS Trust A-Z of MS :www. mstrust.org.uk/a-z
- MS Trust contact us: www.mstrust.org.uk/what-we-do...
- MS Awareness week webinars: www.mstrust.org.uk/MSAW
- Diagnosing MS - Lumbar puncture video: • Diagnosing MS - Lumbar...
- Diagnosing MS - Evoked potentials tests video: • Diagnosing MS - Evoked...
- Diagnosing MS - MRI scan video • Diagnosing MS - MRI scan
- Dr. Daniel Matterson Instagram: / the.ms.doctor
Our MS Trust Enquiry Service helpline is available from Monday to Friday (except UK bank holidays) from 9am to 5pm. Outside these hours you can leave us a message and we'll get back to you as soon as we can. Call our Enquiry Service on 0800 032 38 39 or you can email us [e-mail]. It’s available to anyone who wants to know more about MS, not just those currently living with the condition.

[@billr8829]

Mri coming up Tuesday. Standby for them dismissing me. It’s either ms. Or a rare 1 in 8 billion condition where you have a dozen other diseases at the same time lol

[@mstrust]

Thank you for sharing. Sending you best wishes for Tuesday 💙

[@chlloolou]

I’m not allowing myself to worry overly but information like this is useful for me to keep in mind. I’m 25 and I saw a gp last year as I’d had a daily persistent twitch in my thumb that lasted a month and then just stopped, and since then I’ve had a very shaky wrist. The first gp I saw was very thorough and said I should see a neurologist if initial blood tests came back with no obvious cause. But then the gp who gave me back my results (a bit of a low level of iron) completely overlooked why I’d gone in the first place. So I just left it after that and have tried to improve my diet. But I have a history of migraines, slow thinking, fatigue. Since 2016 I’ve had a bad time with my balance and vertigo. I can lose my footing quite easily but I often find it happening when no one is around and I’m just getting on with cooking or something, it very much is the kind of stumbling when you’ve had a few drinks (except I drink like 4 times a year) so I’m the type to wait for someone else to notice - because if they notice then it’s obviously not just me overthinking. I’ve had occasional waves of tingles around my head and then full body tingles. I get some pinched nerve pain on the base of my skull occasionally. But all of this just comes and goes, I keep note in case one day I really feel the need to go back to the gp but it feels silly when you’re so used to feeling these random things. But this kind of info is very valuable, it’s easy to jump to conclusions but it definitely helps going to the gp when you’ve clearly got an informed opinion - great talk :)

[@mstrust]

Thank you for sharing your experiences and your journey 💙

[@billyboo73]

I'm scared to death. Since June I've had strange things happening. Numb foot and shin. Arm shooting out by itself. Black spot in vision. Then vision going real dark. Lots of pins and needles. Not going to the toilet for weeks. Lots of strange skin sensations. Even feeling scolded. Shaking inside my body. Amongst other things.
My cfs is out of control.
The Dr has told me it's my fibromyalgia.
Can't see the neuro til September next year 😢

[@mstrust]

I’m sorry to hear you have to wait so long to see a neurologist. Unfortunately we are hearing recently that many people are waiting around a year before they can see a specialist neurologist.
Whilst a neurologist is the only one who can diagnose MS, other healthcare professionals may be able to help you with symptom management whilst you are waiting. Hopefully you have been to see an optician about your visual issues - if not then they can investigate your eye health and can recommend further investigation from an ophthalmology team if they see anything that concerns them.
I hope you have also been referred to a urologist or local continence team for your bladder problems. Urinary retention can and should be investigated separately to see if they can find a possible cause. Again it can be treated without a diagnosis. We have information here: pulse.ly/cj83gm6hfo
Your GP can prescribe nerve pain medication without a diagnosis. This may relieve some of the altered sensations you are experiencing. You can read more about nerve pain medication here: pulse.ly/u7wo6x32gb
Finally, your GP can refer you to a physio to advise on exercises that may help with symptoms and a occupational therapist who can advise on approaches to managing symptoms day to day to reduce the impact.
Flora, MS Trust Enquiry Service
0800 032 3839 / [e-mail]

[@alexkay5584]

You can continue a normal life, you have to accept MS yourself before expecting anyone else too. From experience people who don't know anyone close to them with MS will not understand and possibly never will. All I would say is be strong and get used to needles, you will get used to MRI Scans, blood tests and infusions and it's nothing to worry about. My first signs were loss of feeling in my right side and urgency to pee. I have my Ocrevus infusion next week and bloods taken this week. I take Gabapentin every night among other medications. MS affects my bladder which means I catheterize every day otherwise I wet the bed at night. I have a wife and family who understand but don't give me an easy ride and why should they as it keeps me on my feet. A lumbar puncture is the method of detecting MS so I can only advise people who have been for a number of MRI's with no result, get referred for a lumbar puncture, not a pleasant experience although I had a junior doctor practice on myself and actually had 3 lumbar punctures in one sitting. Everyone has their own MS story. Stay strong MS Warriors!!!!!!

[@mstrust]

Thank you for sharing 💙

[@dalenemarie]

My GP referred me to a neurologist, and he dismissed me after having an Emg test, a MRI without contrast. I was diagnosed with cervical ddd, so maybe my symptoms are coming from ddd. One symptom I am having is… when I walk or do any type of exercise, and when it’s hot or humid outside… my left leg feels so heavy and I am so tired when walking that I just collapse when I’m home. I also trip a lot and walk like I’ve been drinking. My left foot gets numb too. I also have arthritis in my right ankle and foot. I’m not worried but I would like Ms to be ruled out soon, because if I do have it, I want to be treated to slow progression. My vision started having black spots, blurry vision and squiggly lines about 8 years ago, and my neurologist said it’s an optic migraine. I’m so frustrated! Thanks for your video.

[@mstrust]

Thank you for sharing your experiences. That does sound like a really frustrating experience. We offer free, confidential advice and information on MS. If you have any questions about the diagnosis journey, please do get in touch with us. pulse.ly/vob0ws0jag

[@RaceDayAnderson]

Can anyone relate to these symptoms? The recent ones don't seem common ? First symptoms:I had a cluster of symptoms over 5 weeks (2 years ago) these symptoms only happened during those weeks: First was a sensation of suction around my eyeball. (I had my eyes checked and both were very heathy and 20/20 vision), Deep pain in leg muscles (like a fist), lost bladder control, forgot words, numbness on right side face and 1/2 tongue very numb and sometimes electricity in arms or legs. Following that I developed low grade fever that has persisted for 2 years. Randomly I'll have very numb patches that last for a day or a few days. Then 3 months after that initial "attack" my right eye developed a Scotoma (grey circle in lower vision), this persisted for another 6months with sometimes pain. Eye tests showed retina is good and don't see inflammation of optic verve. 3 weeks ago that Scotoma changed into a central vision blur, kind of greyish smudge. At the same day my left eye developed grey smudges and I had a sparkling headache on the left side of my face. The last random symptom are canker sores only on my tonsils. They reappear every 2-2.5 weeks, one on each tonsil. (Tested for other factors like STDs and those are all negative.) Blood work is "fine" Iron is within limits but working to raise it. Thanks for reading this story!

[@frankgradus9474]

Thank you.

[@simonbirdsall6635]

Thanks for the informative video. I lost my sight in one eye in April this year which has been diagnosed as Optic Neuritis, since then about half of my sight in that eye has returnied. I’ve been to a Neuro-Ophthalmologist to rule out other causes such as NMO and MOG and they have come back as negative. I’m ow been referred to a Neurologist to rule out MS. I get the feeling of being drained and tired even if I haven’t really done anything to explain it but I don’t know if that would be fatigue, and I do have other issues but don’t know if they would be MS related. I just hope for an explanation to the cause as it was so sudden and I worry that it could happen again but in the other eye.

[@michaelnadin]

I'm diagnosed ENS, a tough battle no doubt. thanks for what you do

[@mstrust]

💙💙💙

[@FlaGrown1955]

Wonderful information.

[@mstrust]

Thank you for watching 💙

[@albin8782]

Whenever I look at white text on a black background (but not the inverse) some of the text gets blurry or pixelated and sorta jiggle. This does not happen if I cover one eye so it must have something to do with their alignment or perhaps one optic nerve is slower than the other? I also see the white blood cells in my eyes if I look at something white (not just the sky like most people with the blue field entoptic phenomenon), also floaters. Also if I look at something with a fine pattern like a carpet I see static over it, strangely enough, unlike the first thing I mentioned; the static gets amplified if I cover one eye...
Also a couple of muscle fibers (not the entire muscle) in random places contract (mostly in my left deltoid, both gastrocnemiuses and sometimes the medial side of my right hand (under the pinky) , though the last one is rare)

[@mstrust]

Hi Albin, If you are concerned about your sight then do contact your local opticians. They can run a whole array of tests to check on your vision and any problems you might be having. It might be worth having a chat with them about what you have been experiencing. You can read more here about vision problems specifically in MS here: pulse.ly/joahpytjbr
I do hope this information is helpful for you.
Take care, Corinne, MS Trust Enquiry Service
0800 032 3839 / [e-mail]

[@LizBrownYoga]

Very helpful thank you.

[@mstrust]

Thank you for watching 💙

[@Carnabwth]

Thank you. This is an interesting podcast. I'm going through the same as yourself regarding attempting self-diagnosis. I've been to see a neurologist who then arranged for me to have a nerve conduction study. That came back as being 'normal'. The neurologist wants to see me again in four months. The two most obvious symptoms for whatever it is are constant tingling in hands and feet and urinary problems. Just over a year ago diagnosed with rheumatoid arthritis which is of course, another type of auto-immune disease. I guess, time will tell.

[@mstrust]

Thank you for watching and for sharing your journey. We're wishing you all the best on your journey 💙

[@klr717]

So how did it go?

[@cad0420alice]

Thanks, this video gave me a new idea of how to get myself diagnosed. Our university has a good neuroscience department that's been recruiting participants to brain studies all the time too. lol

[@mstrust]

Thank you for watching. 💙

[@SoNiKSh0t]

I was diagnosed at a young age with acute disseminated encephalomyelitis (possible MS) but was never fully understood what was causing the inflammations in my brain

[@mstrust]

Thank you for sharing your experiences. Sending you best wishes from the MS Trust 💙

[@maplelatte3366]

Every GP: "Oh! That's just anxiety. Let's get you to a $150/session counselor and get you feeling better!"
Me: "I've been sick for years, and it's getting worse. I can't walk to the store anymore. I kind of need to be able to walk."
GP: "See! You said you have trouble going to the store! It's anxiety."

[@teddylabis6969]

1st ❤