Seeing a neurologist next week!

[Rens]

Hi everyone,

I have been reading a lot in these groups over the last week. I guess I’d just like to introduce myself and also get feed back on my symptoms and what to expect.

Starting from the beginning (what I think is the beginning) in Oct 21 I woke up with full right side paralysis and very slurred speech. Being the person I am I ignored it for a few hours. I finally went to a&e and they thought I may be having a T.I.A I was admitted to hospital and was given a ct scan and two day after being admitted I was given an MRI. I was supposed to have a contrast MRI but the hospital mucked up and did just a normal one. Anyway I was discharged not knowing exactly what happened.

For months after I had problem with my memory and slow speaking I couldn’t remember words like toaster etc. and then 6 months after that I had problem with swallowing and couldn’t eat for 7 days.

The last couple years I have had urine urgency where I am actually peeing myself and have been to gps many times and finally got referred to the urinary clinic and have been put on meds for that.

I have been having memory problems ever since the first paralysis and I went to my gp to talk about it as it has become a running joke with my kids and husband that I can’t remember conversations after just having them when I used to have such a great memory.

In Oct 23 My gp said they would refer to a neurologist but I need to come in for a check up before they do that. When I went in they checked some movements on my legs and arms and it turned out that I was having right sided weakness again but I had no idea. So they sent me to a&e again. A&e thought it may be a T.I.A again so I was referred to the T.I.A clinic.

I went a week later to the clinic and the stroke consultant sent me for another MRI. No contrast just normal. The results were that I did not have a T.I.A and that when I had been in Oct 21 that was not a T.I.A.

I came out thinking what is going on. My docs referred me to a neurologist and my appointment was given to me for March 24

In November 23 I had an accident where I didn’t lift my right foot fully to go up some wooden stairs at a job and I fell forward banging my head and knocking myself unconscious I was taken to hospital via ambulance but the dr said I was fine and could go home no tests done.

Now before that episode in Oct 21 I never had accidents.

I have had slight balance problems alongside all these incidents as well.

Last week I woke up again feeling slightly off but couldn’t put my finger on what was wrong so I did some tests to check if I had any weakness and I noticed my right leg was weak again. I called 111 and they wanted me to go to a&e.

So down I go again and I sit with a dr and tell him everything from that first incident. He actually listened to me he said he thinks it might be MS but he needs to talk to some other drs.

When he came back he said he had spoken to some neurologists at another hospital and they said it sounds like it could be symptoms of MS or it could be Migraine related paralysis. I do suffer from migraines but I never had a migraine with any of the weakness or paralysis.

The dr in a&e did some more reflex tests and this was what was written on my discharge papers.

Peripheral Nerves: Right leg 4/5 power. Unable to elicit knee, ankle or plantar reflexes. Left leg 5/5 power side NAD. Noted to have weaker shoulder shrug and subtle weakness of the hand noted. Unable to elicit triceps and biceps reflex on right. Left NAD.
DASHING: Slight issue on heel toe walking due to weaker right leg

He said he would contact the neurologist I had an appointment with and see if they could move it up sooner which they did and now I am seeing him on Tuesday next week.

I am not sure how I feel about it. I’m scared in case it is MS but also happy that a dr is finally getting to the problem of what is going on with me for the last couple years.

I think I was just a bit shocked as my discharge papers said DIAGNOSIS: MS

So if you have gotten to the bottom of this long message I’m just wondering what others have gone through while starting this path.

Also thanks for reading

[alison100]

Mine was relatively straightforward, but it isn’t a nice path to navigate whatever route you take, is it? It sounds as though you are nearly there, wherever there turns out to be.

[Rens]

Thanks it’s such a stressful time for me and the family. I think the hardest part is just not knowing and thinking I’m a hypochondriac. Now the drs said it out loud and written on my notes I don’t know what to think.

[Rich1]

Hi @Rens

It’s a scary journey and I know what you mean by thinking what is wrong and nobody seems to give you the answers, it took 5 years and 2 admissions to hospital to get to the bottom of my symptoms, to hear the words from a specialist is a scary and sort of final thing, it’s a bit like god asking you join the queue to see him, there was a sense of relief also that I can start focusing on the right road to something remotely normal and my family can start to understand too.best foot forward

[Rens]

Thanks for the understanding. After reading so many stories on this forum I am starting to realise my journey is not as long as others.

As of now I still don’t know if this is the beginning of my journey until after seeing the neurologist and having the tests but at least now something is happening.

I think you hit the nail on the head with the just knowing part so you can focus on the right path for yourself/myself and the family.

I sat down with my husband a couple nights ago so o could right down any symptoms I have had over the last few years as I have a terrible memory now and I sometimes forget to tell drs things like the fact I have asthma. I did this as I have to go on my own to the neurologist and I don’t want forget to tell him anything about myself and family history.

[Driath]

Joining the talk a little late here sorry about that.
Hello Rens, nice to have you on board!
A very interesting read, thank you for all the various details and thoughts alongside. As indeed you seem to suggest, reading such various stories puts our own stories into a greater perspective, doesn’t it?

I can at least recognise several of your symptoms from my own MS and indeed some of your family experiences.
I too have started forgetting things that just happened more and more, including indeed conversations I just had a moment ago with my wife, much to her irritation.
She has unfortunately not quite accepted that it might be an illness symptom, rather just pointing at me being too careless and not listening properly, only remembering things I care about myself etc, so very happy to hear you can at least joke around with your own family about it. I have not quite come that far yet sadly.

I think your idea of writing things down to indeed prepare what you need to say is a really good idea.
There is actually also research that shows that writing things down and reading them out loud makes them easier for us to remember apparently.
I suppose it is stored in a few more different drawers when we activate different parts of the brain for it. It has at least helped me a little bit.
Somehow the memory of the sound of the words spoken up loud flickers a little brighter than just my thoughts, personally.

The journey is as you say a rather unsettling matter, with the final diagnosis however horrible somewhat of a relief.
Personally I was terrified when I was told MS, and tried my best to run away in denial, but my wife was very ultimately very relieved to finally have some answer after more than a week of hospitalisation upon a rather scary stroke-like first-MS experience almost out of nowhere.

There are as you say several other things that could cause many of the things you mention and MS indeed often takes a while because they need to rule out a bunch of other stuff first, so it’s very nice that you can finally find the relief of knowing with some confidence what sense might lurk behind the symptom madness. I must say I am sorry to hear about your back and forth though, that must have been very unsettling and stressful.

Mine was all done within one long hospitalisation, which was awful, but at least rather much faster than most others I read here.
Your call to tell the entire story to the same person from start to finish and have him actually listen was very good. That complete picture is exactly what helps with MS diagnosis, and I can easily imagine it must have been very relieving to finally felt your entire story actually got heard.

Your weak leg accident sounds very similar to my own leg symptoms, and I fell on the bicycle as a result instead even if miraculously unhurt. It made me so paranoid that I now invite mockery at my school every day due to walking up and especially down stairs in this weird wobbly boots-that-are-5-sizes-too-big sort of walking style, arms and hips flailing around as if also spinning a hoop.
It sucks that you needed to have such a painful experience before things really started moving though. I do hope you weren’t too hurt. The MS medicine reduces healing power somewhat too and I personally still have bruise leftovers on my leg and fingers now nearly a year later. I would wish for you to be free of such a thing.

With your diagnosis in hand, what comes next is indeed the road ahead isn’t it? Medicine if any, helpful tools as needed or wanted, the talk with your children and possibly friends. My son is still just a toddler so I cannot quite explain that papa’s brain makes it hard to carry him around while walking up and down the stairs, but I imagine your older children might benefit from being a little involved with mum’s various troubles and indeed how they can help. I have heard several stories from distraught daughters who felt unable to connect with and reach their mothers while growing up with MS in the family, so I do hope you guys can make that work. Open free communication without predisposition is probably the best. No-one else than we ourselves know how our MS feels and works, and just as it is rather a head-scratcher for us to work it out, so too is it a downright nightmare for those around us to fall into the same stride without stepping on toes or just giving up and going ahead.

Well just tossing out my brainstorm of things to share and various if only even faintly related ideas that you might be able to use for something (even if only snicker at it), but do probe or comment (or well indeed ignore!) as freely as you may like. Everyone’s your ally here, so don’t hold back. We all think it sucks, but it sucks a little less when we can grumble at it and point and laugh at it together.
Call out freely as you please. We’re all here. You and your family is going to be alright, even if this new adventure is perhaps a tad unnecessary.
I’m sorry to be flooding the thread with my usual rambling, I won’t blame you for giving up halfway through! Take care of yourself★

[Rens]

Never too late to add to a conversation so Hi Driath and thank you for reading my post. I did make it to the end of your post and I do enjoy a good ramble as I am some that rambles a lot.

Also just to say I am 42 now don’t know if it’s relevant but thought I should say.

I’m sorry to hear your wife is irritated about the memory loss. I am sure she will come around with time. I do understand that I am very lucky with my immediate family. I will not be modest though as it is entirely because of me while growing up I had a good but difficult childhood and the relationships between siblings parents and extended family were difficult and while young I always said when I have my family we will always be happy and laughing.

My husband children and grandson have had a difficult time pre me having symptoms. I have 3biological children with ASD 1 child that was adopted at 17 with mental health issues and my husband I think is undiagnosed with ASD but has mental health issues and OCD my grandson was born with a condition where part of his brain didn’t develop so we have been through a lot of medical issues as a family so I guess we have learnt to take things in our stride and that if we don’t laugh we will cry.

You’re definitely right, I think there is something about writing things down to help the memory I used to walk around with so many note books. I find writing with a pen helps me remember more than typing.

Honestly when the dr said MS I was not terrified as an old friend (no longer a Freind) was diagnosed with MS in 2018 and I was there through the process and did a lot of research for them so I know that it is not the illness it once was. However I do understand it will be difficult with the symptoms especially as my teenagers with ASD get older as at least one will need a life time carer.

Regarding telling my story to one person sadly I have repeated the same story to numerous drs this is just the first one that actually listened to me.

I also had the same as you with the stroke symptoms when I went into hospital complete paralysis but I still didn’t really get checked out. The drs on my side are not great.

Regarding my fall, all I can say is it was rather dramatic and again I have good friends that laugh at situations luckily when I fell I was at a close friends work place and she came with me to hospital and we both had a good chuckle about it and even got the cctv footage so we could laugh some more. I am definitely someone who laughs at myself a lot and my close friends and immediate family are exactly the same. So if I do end up having to have a cane or crutches or any walking aid the first thing I would do is decorate it in some flamboyant colours so that it is seen and make a big deal about it. Cause if I’m laughing other people will feel ok to laugh too.

My 2 teenagers with ASD won’t understand the diagnosis but will understand that they will need to help mummy a bit more. My 19yr old with ASD is high functioning so will understand the diagnosis and will help where possible but will just treat me as normal along with my 35yr old the two oldest are my best friends so we all speak rather openly. Which again is something I initiated while raising them. My husband will be the worrier bless him. But I know he can handle it and my 35yr old, well she will also be there to support him. So I think I am very lucky as not only do I have them I have amazing friends (not many friends just 4 but amazing ones none the less) they will be there for support and laughter. They are more like family.

So you thought you rambled I can ramble more I’m sure. I really do appreciate your lengthy response I actually do enjoy reading the thoughts of other people so feel free to unload any time I am a listening ear. Thank you !