Anyone else go through this?

New diagnosis and before diagnosis
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Hi

I posted back in March and that was my first ever post and I felt like maybe things were on the up after my initial “episode”.

I started having tingling in my hands and face back in December but they had gotten worse by February. I was sent for an MRI which came back clear.

In March my husband had to call and ambulance as I had complete paralysis on my left side, along with high heart rate and temperature. By the time I got to the hospital they said I had sepsis and I was given antibiotics and kept in for 4 nights. By the time I left the hospital, I could walk again and wiggle my fingers.
They didn’t seem concerned so much about the paralysis because a CT scan came back clear and they were able to rule out a stroke, which I think they originally thought had happened.
I also had a neurology appointment booked for the following week so they discharged me to wait for that.
It was cancelled.

Since then, I have been taken to hospital again by ambulance with the exact same thing, and given a course of antibiotics (they found I had covid when I was admitted) and was sent home after 2 days.

The second neurology appointment was also rescheduled.

The third was rescheduled.

The fourth…

And then today finally I had the appointment. The neurologist did what I guess is the basic neuro exam. She said there is definitely weakness on my left side. My big toe went up rather than down which she said indicates some neurological damage. I had a blood test and she has ordered another MRI.

Has anyone else gone through something similar to actually find out what is going on?
The weakness is so bad that I can’t even use my left hand most days. I’m absolutely exhausted and I can’t remember the last time I could properly feel my bottom lip as it has been tingling non stop since December.

I know it takes a while for any diagnosis and I know the NHS are stretched, and I am grateful I am being seen, but today I really felt so upset leaving the hospital after I had waited for this appointment for so long just to be told “I’m not sure what’s going on”

A doctor I saw the first time I went into hospital suspected MS but that’s the only time it has been mentioned. It’s not that I’m waiting on an MS diagnosis, I’m just waiting on any diagnosis and some medication to enable me to take care of my kids and go to work.
Im just feeling devastated

If you’ve stuck with me this long…Thank you xx

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Hello, Goodness me you sound like you have been through quite a process especially during covid, to start with a big positive you are now ‘in the system’ so you will find out what’s going on.

I think Dr’s take a while to make the diagnosis as there is no simple test you can do where someone says yes you have it. It can take a while with lots of tests.

If I think back to my diagnosis at 22, I am50 now!! I found my body appeared not to function so well all down my right side. It was a scary time but for a few weeks I was in hospital and became a very good one handed Tetris player in the good moments. I felt pretty rubbish in the other times thinking as I remember ‘why me!!’
Issues like standing up and all the blood flowing to my feet where I had a few seconds to lie down or I would hit the floor. Not a fun time

But it didn’t last for ever and thing got better

In my case like you I had an MRI and a lumber puncture and from this along with the fact parts of my body weren’t working they were able to diagnose what was going on. It wasn’t fast!!

Things calmed down with flare ups happening almost yearly to the month. Where similar tingles and things stopped working. For me each time it gets a little worse. But it mostly recovers

I am sure that you will get some kind of diagnosis soon so fingers crossed everything will be ok

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Hi James

Thanks for your reply.

I am just worried that this MRI will also come back clear and I will be in the same situation I was in last time.
However like you said I am in the system and I know that it is positive that someone is looking into things for me.

I have read posts of people being diagnosed pretty quickly after an MRI and I guess in some weird way I was hoping I would have a quick diagnosis so I could kind of move on with life.

It sounds like you experienced quite a hard time at the beginning. I am glad that things have gotten better for you. I think that once we know what it is we are dealing with, we have a better understanding of how to manage day by day. The limbo land is the worst part I’m sure.

What I have noticed is that whatever it is I have going on, it’s been unpredictable and it’s made me a little scared to do things alone, especially with my small children.

Fingers crossed for some answers soon.

Thanks again for your reply!

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Hello,

I was thinking about your email today, I had a regular update with my MS nurse today. I was thinking how good it will be if you can get a diagnosis. It was good to speak with someone who can answer those questions that are running in your head and every time I have more.

I get your worry about what could happen with small children, first thing to point out is people around a generally nice and don’t be scared to ask for help if needed people are really understanding.

MS does alter things, but as you will hear everyone’s experience is different. With luck you maybe you just need to add that extra communication about where you are going and making sure you carry your phone just in case.

I am sure when they have the MRI they will be a step closer and I would think it reasonable to ask for the next steps, you may find a lumber puncture will be the next test if the scan is not so clear.
Like you say lets hope you get an answer soon

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Things do take a long time in the NHS.

I don’t mean to alarm you, but I’m almost 2 years along my journey and still no diagnosis.

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Thank you both your reply!

I hope you manage to get some answers soon, I think the worst part is the not knowing and just waiting and I feel a bit like “what am I actually waiting for” someone to tell me what’s going on but really it’s more about how to continue forward.
2 years is such a long time to be going back and forth and it’s really hard to move on when you feel stuck.

Work have been great and I have cut my days down but I feel as though without a diagnosis (of whatever it may be) I can’t be definitive about what works to get me through the bad days and also I’m sure they feel a bit annoyed that Iv had to take days off.

James - I think it’s brilliant that MS nurses are available to talk too. Iv found even just by reading this forum that I have gotten answers to things I didn’t know where to look for before.
I haven’t had a date yet for my MRI so I am just waiting for that. Otherwise I have felt pretty well this week! Hoping you have also had a good week!

Take care and thanks for your reply.

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Hi Lanta, I experienced the same symptoms as you for a very long time (17-27) and I was misdiagnosed with epilepsy and then they looked into MS, I had seen multiple doctors. Neurologist had multiple MRIs and nobody could explain why I was having these symptoms. In August last year, I thought I was having a seizure and was having the same symptoms you are describing, I dismissed them as I had been experiencing this for 10 years without anyone being able to explain why. I ended up going to hospital as my speech became affected the hospital did another MRI and had found that I had had a stroke, they ended up finding that I had a hole in my heart, which they informed me one in four people do. The reason I had been having what other doctors had diagnosed as epilepsy and seizures, was because I had a hole in my heart, and then had been sending clots to my brain, and I was having constant strokes. In the space of four weeks I had 15 strokes they performed heart surgery called a PFO This surgery has nearly fixed all of my symptoms and the neurologist and cardiologists. Have explain to me the importance of how much my blood pressure had to do with what I was experiencing because of the hole. I could be way off, I just searched for years and I hope my story helps someone else. I hope you’re well.