my symptoms, explaining to GP

New diagnosis and before diagnosis
1

I am a full-time worker, I drive a forklift, do heavy work, most of the day. Five days a week. I suffer with severe fatigue, and numbness, in my feet, and legs. Last for 48 hours, looks like I am drunk walking to shops.

I have a numbness in my left arm, and lower calf on my left, been on and off, for days, and then now, it beginning to last two to three days. Went to GP, two years ago, explain it, GP said it maybe over worked stress on the body. Gave me two week sick, which I just could not believe, now dumb, and stupid I felt going there.

Last December, had a seizure after swallowing, that has happen a few times to me. Blackout, and found myself on the floor, still in the seizure, and came back into reality with, amazing headache, and electric shocks in my head, for hour or so. Numbness in my left arm, to hand, thump, and two fingers, could not feel things, like normal. Went to the doctor in January, and explained, got three months sick leave, and he told me MRI or CT would be optional, and Neurologist appointment first. Still waiting, and did my bloods, still waiting for my blood results.

I know I had these symptoms, long time ago. Numbness, tingling, and that damn itching on my legs, and arms, and upper body. Both feet numb, could not walk for two days, and I had too, one day, nearly fell, and hit my head on the pavement. Both legs were numb, tingling and could not walk, that was one terrible time for me, lasted four days, and woke up on morning on fifth day, blurred vision.

Left eye pain, had that for ages, on and off, sometimes it lasted weeks, even months. (ten years with this.).

Starting to lose of memory, and change in my character, like mood swings, and depression, and anxiety. Becoming Stupid, meaning doing the most stupid things, going to the shops, and forgetting everything, and walking back empty handed. Putting my keys in the fridge, and leaving a butter pack in the bowl, where my keys should go. LOL

I am 45 years old man, had these symptoms for twenty years, and GP, say its only stress years ago. Now I got a GP, who is trying to help. I am angry, and frustrated, and totally P-off. I just want to know, what is happening to my body, and etc.

2

Hello Steven

Welcome to the forum. You’ve had a hell of a time over the years. Some GPs are a flaming disgrace, writing everything off as stress. Once upon a time ‘stress’ didn’t exist. People were ill or were well.

It’s a good thing you’ve got a good GP now.

Maybe what you could do is try to write out a timeline of what has happened to you and when. That would represent a clearer picture for the doctor/neurologist when you eventually get that appointment.

You could chase up that appointment by phoning your hospitals appointments team and check they have the referral and maybe get some idea how far away it’s likely to be (perhaps ask if there’s any cancellations?) If the appointment is still a long time in the future, see your GP again and ask if s/he can rerefer as an ‘urgent’ case?

S/he could even refer you for an MRI scan in advance of the neurology appointment, it might cut a bit of time out of the whole process. I don’t usually suggest people get their GP to refer for MRI because they aren’t able necessarily to read the scan and in any case, you need a neurologist to examine you, take a history and then refer you for tests. I can just see that you have played a hell of a waiting game for years. And seizures, blackouts, as well as cognitive issues should be checked out rather more urgently than you seem to have been treated.

If you have any more seizures or blackouts, bypass your GP and go to A&E. It’s the kind of thing you should have looked at sooner rather than later. In my (total amateur) opinion.

Sue

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I will follow your advice, starting Monday. Thank you. I keep you updated. OK

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Went on Monday, receptionist told me - need to come in again this week, due too some problem getting a result. And others were OK, normal. Asked about the referral to specialist(Neurologist), nothing yet? Weird. I keep wondering I getting the run around again. Seen the reviews of my medical center - not good, at all. I would say 8 - 10 people, were disgusted to the service, and now the practice runs, due too many referrals not going to right NHS department, and wait time. I keep wondering to myself, is it worth it, or just live with it. Because i get the feeling that Doctors do not care about patients? Maybe, I am wrong.

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I think a lot of GP surgeries are getting bad reps just lately. It’s because of the number of patients they have registered with them and their lack of time / doctors.

Mine can be a bit hit and miss. Some of the doctors are great all the time, some great some of the time, and others a bit, well crap mostly.

I suppose all you can do is keep trying!

Sue

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Thank you, for spending your time, answering my Messages. I truly say, thank you. This is a late reply at 10.40 pm. Feeling a little low, and also cannot even fathom what is happening to me.This morning, My head hurts, and blurred vision has not come back. So that is good. The numbness is somewhat going away, with time. Plus a bonus of not working, because the Doctor said, it would be best to rest. So my whole body, can get back to normal, maybe. But, in the back of my mind, keep thinking, about numbness would come back, and haunt me again. I do exercises, and see weakness on my left side, arms, and leg. Loss of strength. Seems, that I am fighting a foe, I cannot see, but, it is inside my body. If you understand the meaning of this. T The Fatigue is still around, and sometimes I get over tired, and then the tingling starts. And sharp pains in chest, and lower part of body. It goes away, then after a few minutes, tingling, and feeling of something under the skin. Like insects, biting. And then it settles, nothing for ages, and tingling comes over whole body again. I wrote everything down, time, and everything. Electric shock feelings, are weird. Like warm, and cold. Strange. Then a sharp headache, and feeling of tiredness. Oh well, still waiting to see the Neurologist, got lots of notes, and questions, to ask them. Thank you again.

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Hi steven i had very similar for years i feel your frustration.

Have you been referred to neurologist? If so find out if they can see you privately. The difference is 2 to 3 days wait for appointment rather then months and being dealt with much more positively. I did it with mine he was great. Yes in those days 2006 (my first symptom i am scary aware off was 2000), i paid 90.00 to see him for 30 minutes saw him in TWO DAYS rather then 3 months. I have stayed with him on and off on NHS and when i feel like a longer chat privately. We stuck together and in 2016 after another VEP test came back positive he diagnosed me with Primary progressive MS. Oh by the way i had weird seizures would feel like i had just disappeared in my head then wake up not know where i had been or what i did my brain stopped making new memories. i was diagnosed eventually with Transient Epileptic Amnesia. they were not seizures where you fell on the floor but i would just repeat myself over and over again. freaky lol.

Eye pain ugh.

So if you can afford it see the neuro privately. its the best way to go.

As to telling your GP. Only concentrate on the main things that are upsetting you. Don’t add all the little stuff. I gave a list to my neuro a small one of all the main things, and a diagram i made of exactly where my pain was, he thought it was ace, and actually thought it was a great idea. He could see straight away i was left sided weak, and concentrated on that side when doing his exam. He was happily sticking needle in my feet and i couldn’t feel a thing on the left side but nearly kicked him out the door on the right foot lol…

So just write down the worse things the main things.

I am amazed you haven’t been tested for epilepsy to be honest.

God what a load of rubbish your GP was, i had the same in 2000 i went blind in brazil, then it got a bit better got home it did it again, and my GP never checked my eyes or my BP and said it was the heat. Bah humbug useless man.

IT TURNED out after tests years later i have been suffering with Optical neuritis.

good luck but dont give up stress jeez if you get all that with stress what is your BP like? If you want to know what my journey was like i wrote a blog it helped me to heal a bit. The beginning – My Journey begins in Brazil. – My Journey with MS

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Look up Lhermitte’s sign? (buzzing electric shock syndrome).

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Thank you for your Advice Crazy Chick. I cannot afford to go private, twenty years ago, i could off done that. Lost everything in 2008/9, during the banks ripping me off, and freezing my assets, lost everything. If I had the money today, I think I would be seen quickly. Just waiting, got another blood test tomorrow, due to some crap, the other blood test was normal. I am feeling fine today, just the dull pain in my shoulder, and left foot, numbness has gone. A friend told me straight, you need to tell them at GP practice to move there arses. She was giving me shit, and told me, do not let them fog you off, or lose you in the system. She told me about my father, which I told her about long time ago. And look what happened to him. Yep, I know, I replied. Sorry about the long, boring reply…LOL

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Nah steve not boring. i feel for you hun. 2000 i went blind my GP said not to worry never even looked in my eyes, and 16 years later i was told i had PPMS. Even with the private consultations…the wheels on the bus go round and round, round and round round and round, and never seem to stop anywhere lol.

Yes kick some butt.xxx sorry you have been through so much loss hun. xxx

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I have looked at this website for the first time today because I have had various conditions over the years that occasionally have heard could be signs of MS. But even though I’ve been to the GP numerous times no GP has ever mentioned MS. After reading about MS for about an hour on this website I feel less scared, less like I’m ‘going mad’, now I feel relief, anger that I could have had more understanding for years, for myself and from other people who couldn’t understand what was going on with me (anger with myself that I didn’t look at this website years ago). I have not understood my symptoms for years but now feel it makes sense. I think I have MS. I think I need to get tested for MS.

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Hello

Welcome to the forum.

You need to know that symptoms that to you seem like signs of MS aren’t necessarily. There are many, many symptoms of MS, that are also symptoms of other diagnoses. So don’t decide for yourself that it’s definitely MS. Chances are, it isn’t.

What you’ll need to do is to see your GP, explain what symptoms you have and ask for a referral to a neurologist. I wouldn’t tell the GP you think it might be MS, equally, assuming you see a neurologist, I wouldn’t tell him/her you think it’s MS. Generally doctors like to hear symptoms, do a physical examination and then decide which tests might be needful to ascertain what is causing the symptoms.

I would start by writing yourself a timeline or diary of what has happened to you and when. Note how long symptoms lasted and whether they’ve completely resolved or whether any are still affecting you.

Don’t spend too long asking Dr Google for help, he’s a crap doctor.

And don’t take this post as being too negative. It’s merely being realistic. After seeing many posts from people convinced they have MS and making themselves unhappy trying to prove something that’s not correct, it’s better to start out with an open mind.

Rest assured, that while you go through all the hurdles that being tested for a neurological disorder brings, we will be here, available to answer your questions and worries as you go.

Sue