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lilbird
10 months ago

Hi there @barbarella sounds like you’ve had a really long frustrating wait so far, what sort of issues have you been experiencing?


stumbler
10 months ago

Hi @barbarella and welcome.

Your story would sound familiar to quite a few of us, having mysterious ailments which aren’t taken seriously.

The thing to do now is make a list of all these strange symptoms, so that you can pass this to the neurologist.

This appointment might take some time to come through, Neuros are busy people. So, you might want to consider taking a short cut and asking for a private consultation, finances permitting. You could then switch back to the NHS lists afterwards.

Unfortunately, the majority of symptoms that present in MS, also present in various other conditions too. Diagnosis is a case of eliminating the probables and then discounting the possibles to get to the bottom of what is bugging you.

In the meantime, go easy on yourself. Getting stressed will only make things worse, so rest up and look after yourself.

Do keep us informed of how you get on. 😉


barbarella
10 months ago

I have electric shocks in my feet, mainly started with my left leg but now in my right. Cramp in my shin bones. Spasms, co ordination knocked off, I’m tired all the time, feeling of water running down back of my legs, my left outer aspect of left foot and leg is numb, forgetful, well when I say forgetful not really, I know what I want to say and its on the tip of my tongue but I’ve no idea what/ who?? I had a problem with my vision more than 5yrs ago, nobody could tell me why, not investigated. I trip when I’m walking sometimes, if my leg goes into spasm when I’m going down the stair I end up falling down the stair. Light headed and dizzy. Yes believe me I am stressed to the hilt. I have problems driving sometimes. I have a problem with gripping things and drop them or cannot open time, bottles, simply easy tasks. If I can’t get to the toilet when I need then sometimes a problem. I hate the fact that drs just seem to ignore me. I’m not stupid. There is something wrong. Pain sometimes unbearably I end up crying its that bad. Drugs they have given me you wouldn’t believe. Sorry for my rant.


shazybabe86
10 months ago

Hi lovely.

I was same, knew something was wrong with me but doctor’s wouldn’t listen to what I was saying. I’m Awaiting my treatment to start. But I am so forgetful when it comes to certain words within a conversation I’m having.
Hopefully you will see neurologist soon and things can move forward in a more positive way.
I was diagnosed as having depression and anxiety, my head felt emmediatly clear when the diagnosis was given. Hoping it’s going to stay that way.

Always here for a chat if it’s needed, just getting used to the shift.ms website my self and talking seems to be the way here.

All the best

Shannon. X


barbarella
10 months ago

I just want someone to listen to me. I don’t know if its related, but driving home from work today I had wot felt like sparks/ electric shocks in right side of my face, left hand side of my face is numb. Went to hospital here, saw a nurse. I have to go to another hospital at ten past twelve tonight to see a Dr. Hospital is about 19 miles away


aabreu
10 months ago

I feel your pain. I’ve had the electrical shocks. They were the first symptom. It was like grabbing onto a live wire. Being hit in the head with a stick. Then numbness.
It intensifies sometimes but never goes away. Each time it happens, something new springs up. Permanent damage accumulates.

I am frustrated with my diagnosis too. I struggled for treatment options. Neurologist are some of the most conservative people you will ever meet. A doctor specializing in MS is my suggestion. And remember, if you don’t advocate for yourself, nobody will. If you don’t speak out you won’t be heard. The doctors hide behind their white lab because they are scared. Do not be afraid to question and challenge?
Be strong.
Good luck.
And the people on Shift are top notch. They have been so helpful to me. There are some very knowledgeable people on here. Don’t hesitate to ask a question.


barbarella
10 months ago

Was at hospital early hrs of this morning with my numb face. He said it could be related to my other problems. He said he would write to my Dr and see if that would chase up an appointment for me with a neurologist.


petlamb
10 months ago

Hi @barbarella 😊

I feel for you with what you are going though. It sucks.

However, as per @stumbler says, this is the way it works for neurological conditions because it could so easily be something very similar and the neurologists don’t want to misdiagnose – there are more than 600 disorders of the nervous system, so their work is cut out.

Your symptoms do sound very familiar and I can relate to a lot that has happened to you. All I can say is hang in there – whether you see a private neuro or an NHS one, I think an answer is imminent.

I know it’s easier said than done, but try to be strong and don’t stress.

Suze xx

((((hugggs))))


barbarella
10 months ago

Yeah it is easier said than done. I’ve looked after people before. I do not want to end up like them to be honest. I don’t mean that in a bad way. I just would not cope if I’m like these ones


dramaqueen
9 months ago

Be kind to yourself diagnosis will probably upset you more. Your cup is half full not half empty as barberella says stay strong don’t stress and remember MS is not the same for everyone. Some only ever have one episode their whole life. Maybe speak with your doctor steroids give you ashort sharp shock to help your body recover if not abused a course could improve symptons. Its what a vet gives animals for loads.


barbarella
7 months ago

Hi all. I went for my neurology appointment yesterday. Gave my symptoms I think. When she pricked me with the needle I didn’t always feel it. Is that normal???? Got loads of bloods taken 7/8 tubes. I’m getting a brain scan,MRI at some point. Waiting now for a letter. Any idea how long all this takes??


stumbler
7 months ago

@barbarella , this is all routine. The pricking is a form of nerve conduction test, to see if the brain responds to physical stimuli. As you didn’t always feel it, this points to a neurological problem.

Waiting for letters? Now, that’s a “how long is a bit of string” question. But, if you haven’t heard anything in a fortnight, contact the Neuro’s secretary and politely chase it. 😉


vixen
7 months ago

Hello @barbarella, it’s great that you’re having an mri at last. Did they mention a lumbar puncture? The blood tests will hopefully be able to start ruling other things out. Stick with it, you’ve come this far. Let us know what the neuro says when you get an appointment. In the meantime, take care and look after yourself with lots of special treats x


cee79
7 months ago

Hi all, hi @barbarella, we are all here for you and all in the same boat, we have all been through this frustrating period unfortunately, but you gotta do what you gotta do in this process, go with the flow, it helps to document, keep a diary of symptoms and also document when u first started to feel weird/uncomfortable sensations. Make sure you take someone with you for your neuro consultant appointments, that helps also. Do what you can to manage your symptoms, be safe whilst driving, and don’t push your self too much if your not sure.
This is the time when you need to go with the flow, the more times you see your GP the better, as they will chase things up too and if you keep presenting with the same issue they have to get something done about it.
Sounds like you are on your way now, they have started their test and investigations and it will only be a matter of time.
Be strong, it’s only natural that we fear the unknown, please remember to stay in the present, because that’s all there is realistically. We’re all on the same page, keep in touch. This is an excellent resource for questions and support, continue to use it x much love x


barbarella
7 months ago

Hi Vixen,they did mention lumbar puncture but that would be last thing they do. I have a definite left weakness Nd my foot Nd outer aspect of left leg numb

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