Crazy lady with Symptoms for 8 months

Hello everyone.

I am posting here really just because I feel so alone with what’s going on with me and I don’t speak to anyone about it now as I am almost embarrassed about going on about it. I was told I would go on about symptoms all of the time so I have stopped and just trying to be normal.

I probably don’t have MS yet I have found no better forums than this for being in limbo with neurological symptoms. I have read a lot of the posts and the support is brilliant.

This is really just me letting it all out so please feel free not to read it all! I have been holding off for a while, I even posted a couple of months ago and deleted straight away as I embarrassed myself. But I am doing this now as I really feel like just getting all of it out will help me, so Sorry in advance!

I am not diagnosed and I don’t think I have MS, I have been dismissing the possibility as my mum has mentioned it a couple of times and I have told her it’s probably just stress as I don’t want her worrying. Stress is a possibility for my symptoms.

Last Summer I was at work (I was a housekeeper) and I noticed my right hand has pins and needles, like I had sat on my hand for a bit. This didn’t go away for a while, can’t remember how long.
I remember one night my whole right side having the same sensation. I felt like this for a couple of months but it wasn’t extreme. It affected my painting, I struggled to hold my arm up as it felt heavy.

At some point during this time I started to get floaters in my vision. I remember seeing these grey lines swoop over like windscreen wipers. They have never gone away.

One night around September/ October I woke up and my mouth was numb, I panicked and went to the bathroom and was prodding my face like a crazy women.

I don’t think my face stayed feeling numb for a really long time although I had this sensation under my nose like I had sniffed pepper for a while. I cant remember how long this lasted, sorry.

I became so tired, I found this very embarrassing. I would do a few jobs around the house and then have to sit down. (This feeling has stayed most days) Like someone quickly sucks the life out of me. I stopped working as I felt unreliable.

September doctors did vitamin tests. Got an email from the saying I was low in folic acid and prescribed tablets for 4 months. B12 was fine.

I assumed folic acid deficiency was what was causing the issues.

I persevered for a few months. I get dizzy, I remember everything just looking different when I walked, almost like my vision was out of time and I would get motion sickness just walking outside.

I can’t remember when I noticed but when I watched telly one night I was saw a repeat of the image to the right when I blink. This hasn’t gone away and I see repeats of anything unless it is a dark room.

My vision is like a tv static that is transparent. I noticed this late last year. Sorry this is t all in order.

I went to the doctors in November as I didn’t notice any improvements as was concerned about my visual issues. She did an urgent referral to a Neurologist. She also told me that my folic acid level was just on the verge of being low and wouldn’t cause my symptoms.

Around the same time I started to get severe back spasms. I had issues about 10 years ago and my back spasms once.
I have been having spasms about once a week since around November. It could be that this is caused by being less active.
I didn’t do anything about it as I am so embarrassed to keep going to the doctors.

About 4 weeks ago I went to clean my Grandads bathroom and when I went to leave I had the lost horrific spasm it was like if one could imagine what it feel
Like if your back was about to be snapped in half, I thought I was going to pass out. It lasted around 5 seconds and I couldn’t control my body. I hobbled to the pharmacy just around the corner to ask if there was anything they could give me. They said no. So I gave in and went to the doctors again.

I’m now on a waiting list for physio as well as Neuro. My doctor has told me it will probably be 12 months before I see Neuro.

Meanwhile I have given in and had to accept this is how I feel now and I want to feel independent. I have just started working again part time as we desperately need money and I can’t just be too tired all of the time. I wear heat pads to help my back and I’m taking diazepam.

Something I haven’t told the doctors as it’s too embarrassing is that I have started to get a weird feeling in my throat that it’s closing up
On its own. Not there all of the time. The feeling you get when you swallow, when you feel your throat, that sometimes just doesn’t go. I’ve also woken up once evening this week gasping for air. Its nice to write this all down, I know I sound crazy!

Maybe I did this all to myself and just the stress of thinking something was wrong made it all worse. I am now just getting in with things and just hope nothing else happens.

I am quite good at managing pain, and I don’t like making a fuss, so I am so embarrassed that this has all happened and that I sound so dramatic.

I am finally writing this as I also get this burning feeling that feels like anxiety in my belly when I’m not anxious, it’s woken me up before and it’s happening this morning so I just thought to hell with it, I need to talk.

I’m just a busy lady with a shod load of things going on in my body.

And I’m letting it all out.

To anyone who made it this far, well done you xxxxx

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I’ll be the first to acknowledge that stress can cause weird and serious problems. Many years ago, my best friend developed grand mal seizures. The inaccurate tests of that time showed that she had an inoperable brain tumor. Her health deteriorated rapidly, and she had to take a leave of absence from her gov’t job. She was so stressed at being told that she was dying that she began seeing a psychiatrist. Two years later, she finally discovered that everything had been caused by childhood abuse combined with a high-stress job. Once she came to terms with all that, she got better rapidly, went back to work, and never had issues again.

That said, I spent many years listening to my MS symptoms being chalked up to stress, immaturity, alcoholism, selfishness, smoking, laziness, seeking attention, and pretty much anything else you want to tack onto that list. It took me 45 years to get a diagnosis, because when a doctor would blow me off I’d just drop it until the next symptom got severe enough to seek help. I let them convince me that there was nothing wrong with me and I was just acting out. I will forever regret not standing up for myself, because I’m far enough along now that there are no viable treatment options available for me.

I hope you don’t have MS for your sake, but seeing a neurologist is a step in the right direction. Yes, you have MS symptoms, but unfortunately they’re also the symptoms of a number of other health conditions. Don’t be embarrassed, and don’t keep everything bottled up inside. Regardless of the cause, there is SOMETHING wrong with you, and you are entitled to a diagnosis.

Keep a logbook of your symptoms and when they happen. If you can afford to go private, do that instead of waiting for the NHS to line up a neuro for you. Get your GP to treat as many of the individual symptoms as he can. Rest when you need to. You may be undiagnosed, but you’re far from alone.

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H Busybee.
First off, you dont sound crazy at all and I doubt if you are.
Even if a person has mental issues or not, crazy is a cruel description…even though Judge Judy says it a lot. She should know better!!

So have you thought about seeing a neuro privately, to avoid the dreadfully long wait? In 1990 I needed to see a neuro and the wait was 10 months! So I paid £200 and saw one within 2 weeks. I believe it is still around the same sort of cost today. After that I transferred to NHS and saw the same neuro again!

Stick to your guns sweetheart and see someone.

We’re here for you.
Boudsxx

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Hi PBMS

Thanks so much for replying, I am so very grateful.

I didn’t even realise I had used the word crazy as much as I had :smile:. I have felt at times like I must be imagining symptoms or losing my mind, it’s a scary feeling.

I thought the cost would be much higher so I will definitely look into this, thank
You so much. It’s would be so nice to be another step closer to sorting myself out or at least understand what’s going on.

Again, thank you for taking the time out to help, much appreciated x

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Hi NorasMom.

Thank you so much for replying to my post, I am so grateful and just sharing everything has really helped me feel a lot better.

I will definitely start noting everything down, this is really helpful thank you.

Also, thank you for sharing your difficult experience. This has made me think and perhaps I should be more pushy. I think if this had all happened prior to Covid I would have pushed more, it’s so hard to even see my doctor now. Thank you so much for your help x

You’re very welcome hun. Glad I helped a bit.
Bouds

Please never feel bad for splurging on here. If you don’t have a support system close to you then use this forum. I’d also do a PHQ9 form which is the NHS analysis for depression. If you come up as very depressed I think it triggers certain escalations within the NHS…

Hi, sorry I missed your reply. Thanks so much for the support. I am so pleased that I posted, it has really helped.
Thank you for the advice, really appreciate your help.

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