Newly diagnosed with MS - and I am confused

New diagnosis and before diagnosis
1

Hello, I am a 40 year old male, who for quite a few years was having very strange symptoms. This included spark-type feelings in fingers, pulses, pins and needles, a weakening of my left leg (and now some familiar feelings in my right occasionally), pins and needles comes on super quickly. Tonnes of other stuff like exhaustion even when I sleep and more.

I have known for less than 10 months, but in 2019 the Doctor suggested MS and something to be looked at. I am very new to this and have support and more but wanted to reach out to people here as I sometimes feel like a fraud.

I have days where my symptoms are good, or sometimes bad, or sometimes I feel ‘normal’ but then mixed with the room spinning and more. I do have answers from doctors, but a lot of the answers are that it is different for different people and so I was advised to reach out.

I wonder if these questions make sense or if there are answers?

  • My left leg can go ‘dead’ and I struggle to walk, and yet there are times where the limp and deadness is hardly there ( but still has odd dead feelings) I just walk better. My friend has said to me a few times that I am sometimes bad and sometimes not. I feel like a fraud.

  • I feel so helpless, work are doing amazing things but I don’t always want to talk about my issues. I don’t know how to. For example, I had some appointments Yday and my boss said ‘I thought you had your diagnoses’ and I had to try and explain that still have appointments that support me!

  • Are there any herbal or natural remedies that can help with the weird room spinning?

Also just looking for advice and support as I am still very much confused.

Sorry for asking.

2

Everything you’re feeling (both physically and emotionally!) is very normal. The “fun” part of MS is that it’s constantly different. The symptoms that bother you the most may never affect someone else with MS. You may also find that yours goes through different cycles. The symptoms you have now may go away in a few weeks or months, or they may stick around forever. You may develop new problems down the road.

My legs work much better in the morning than in the afternoon. Better in cooler weather than in hot. Better on level ground than going up or down hills. This is probably TMI for a man, but during “that time of the month” I had more trouble with my left leg than at other times. They can also be affected by stress, illness, and emotional upsets.

You’re not a fraud, but you will have good days and bad days. You’ll even have good hours or minutes. I’ve been walking along just fine and then suddenly my legs won’t work anymore. Sometimes I have to just stop in place and then try again in a few minutes, and sometimes I have to find the nearest chair or floor and just sit.

I’ve found that if I over-exert myself today, I’ll be hyped up half the night, feel good tomorrow, and then be so exhausted the next day that I can barely get out of bed. With any luck, you’ll be able to see patterns in your symptoms and know what makes you worse. Unfortunately, there are still going to be many times when MS catches you off guard. Just do the best you can at any given time, and rest your body whenever you need to.

1 Like
3

Hi sparks ,

I am also fairly recently diagnosed, male 41. I totally understand what you are going through at this time and belive me when i say you are definitely not a fraud.

Sometimes i think maybe my diagnosis is wrong and they will ring and say sorry its a mistake , but how ive been feeling this week i now know that wont happen.

My work have been very understanding but like you i have had many appointments since diagnosis and sometimes i dont think they believe me when i say im fatigued

The journey to get to a diagnosis for us youngish men is usually a long and frustrating haul as we are not usually belived which can also put doubt in our heads.

Just thought i would drop you a message to let you know you are not alone in this journey.

Wobbly

4

Thank you so much for this reply, it is really nice to read and makes me feel confident. Don’t worry about the time of the month comments, I am very open about those things with my partner and she is with me, so it’s never uncomfortable for me. Thank you again. I recognise a lot of what you are saying :slight_smile:

5

Holy-moly, thank you. Yes exactly all of this. Work want me to see an OH person and that is fine but they do not understand that actually, I have sop many appointments and that I am still getting used to this that it’s yet another anxiety inducing thing to think I will have to go over it all again. I’m putting it off as much as possible - and yes I will do it - but I just sometimes want to feel human and the thought of work being another place where this is all spoken about and part of who I am makes me feel even more like MS owns me and that I don’t own MS - if that makes sense. In a way, work was my solitude, so it just makes me feel anxious.

Totally get the waiting for a call thing! I sometimes still don’t believe it myself and that is a part of it, I am sure they are wrong. But just the other day, I wrote down a list of things I struggle with (and this is not finished) as I am applying for PIP - because sometimes I cannot get out and about as I have no car which leaves me stuck indoors, and it was only writing these down that I realised that I have so much going on and that made me feel like I need to own this rather than it dictating to me and I am not quite sure how that works yet.

Thank you Wobbly <3

(fwiw, here is the list I compiled so far)

Pins and needles: severe and intense and won’t go. Happens quickly and without much warning.

Left hand

Right hand

Left food

Left leg

Right foot

Fingers (all)

Toes

Burning

Left hand

Left foot

Left leg

Fingers

Kicking out: body parts move on their own.

Left foot kicks out in bed

Left leg moves (shifts)

Right foot kicks out

Twitching: twitches that move from part to part and mix with pulses below

Left hand

Left foot

Left leg

Left shoulder

Right foot

Pulsing: ongoing and moving from place to place and won’t settle:

Belly

Bum

Left leg

Right leg

Arms

Side

Spine

Neck

Eyes

Upper right arm

Upper left arm

Vibrating: feels like a mobile phone vibrating

Left thigh

Right thigh

Bum

Left foot

Pain:

Left leg

Left hand

Tightness around chest

Weakness:

Left leg

Left hand

Right hand

(New) right foot

Itching that doesn’t go:

Back

Belly

Arms

Face

Chest

Neck

Ankles

Dizzy

Room spinning

Room slanting

Other symptoms:

Tired after sleeping

Needing to sleep during the day

Tingles in tips of fingers

Dead leg

Heavy legs

Can’t lift feet (mostly left) - scuffing

Drop items

No feeling to touch

Odd feelings on skin (doesn’t feel like my skin)

Can’t remember things

Lose things in my head

Can’t pull things out of mind

Other things:

Dropping items

Cold feet

Cold hands

Heat makes me feel bad (and has caused the room spinning)

Movement:

Stumbling (as if pushed)

Falling over (70% to left)

Balance goes

Walking is VERY hard. I cannot walk from my bed to my kitchen without issues and anything above 20 metres I do need to re-adjust or take a few moments to stop and restart.

Examples:

Twitches and pulses, goes from leg to him to hand to arm again, then bum. Regularly at night.

when

All of the above will happen regularly but not all at once and symptoms and feelings can change from day to day and week to week. I have good days, bad days, brilliant days and hard days.

1 Like