First GP visit and PTSD

New diagnosis and before diagnosis
1

I’m experiencing my 5th or so ‘flare up’ in ~2yrs of a group of worsening symptoms and a family history that strongly suggest ‘rule out MS’ and I have an appointment with my GP in just under two weeks.

I’ve not approached my GP with any of these symptoms to date as I’m a trauma survivor so I’m good at suffering in silence and a lot of that trauma was medical so I’m keen to avoid triggers. However I’ve become so disabled that hiding is no longer an option (single parent of 2).

Would anyone who’s been through the process give me an idea, in some detail about what’s likely to happen, assuming the GP doesn’t fob me off. Merely being in the presence of a Dr is triggering for me, if I know what to expect on the day I’ll find it easier to attend. I’ve seen some posts where people talk about getting out of hospital- often after a steroid infusion, what’s the likelihood of something like that happening? I know no-one can talk in absolutes but I’d feel more able to keep this appointment if I knew what to expect. What does the actual pathway to diagnosis look like in England, not the NICE one, the real one.

TIA

2

Birds Birds Birds It’s to soon to suggest anything, your GP is not a neurologist and only they can say for sure if you have MS,if you have a list of your symptoms that would help, plus the GP can only put you forward to the neurologist. MS is different for different people, symptoms of MS are very similar to other illnesses and you have to have a lot of tests to narrow it down and that can slow things down a lot.

I would take someone with you who perhaps knows your problems and help to settle you down. I didn’t go through my GP as I had problems with double vision and it was may opticians who asked my GP to put me forward and I still had to have an appointment with him to make sure that it was true, it was the doctor at the eye hospital who asked for a MRI the second time I went there.

When I went to the neurologist, I didn’t know why I was there? It was the letter from the neurologist that told me what they were looking for, demyelinating disease. I have now had two tests done and waiting for April for my appointment with the neurologist.

This has taken a year so far. And that is fairly quick, there are some people who have been quicker. On this site there are lots of people who are at different levels of MS, its these people who can tell you about their MS, I would ask lots of questions and leave dr Google alone he can scare the pants off people. I hope some of this may help you.

Kay

3

Hello

What Kay has suggested is a good plan. See if you have someone who can come with you to see the GP. Maybe the same person can keep coming with you to future appointments?

If you were to write down a timeline of what symptoms you have, when they started and how long they lasted, you’ll give the doctor something to concentrate on, and you something to keep your nerve.

What I would expect is that you see your GP, explain what symptoms you have and why you think they could be neurological in cause. The GP then, hopefully, refers you to a neurologist.

You then need your timeline again. So you can explain to the neurologist what brings you there, what symptoms you’ve experienced and whether they get better or stay the same.

The neurologist will need to do an examination, to test your reflexes, pin pricks and scratches on the feet, balance tests, eye tests etc. Often there is a nurse sitting in the room with you and the neurologist. But not always. So if you do have someone with you who you trust it will help.

The neurologists I’ve seen have always been ultra professional, asking permission to for example touch my feet, roll my trousers up to the knee, etc. I’ve never felt at all uneasy about a neurologists appointment.

That in itself doesn’t necessarily help to calm you down as an abuse survivor. But hopefully it might reassure a tiny bit.

Following the neurology appointment, you might be sent for tests, again you can always take someone with you to the appointments.

Hopefully all will go well and you’ll cope with the medical process.

Sue

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Well, I went from being admitted to hospital at the beginning of October last year and having every test going to being told in the middle of November I had MS…by the same Neurologist who told me, when I was in hospital, he didn’t think it was MS!!! I’d never had any symptoms before, although my MRI scans told a different story. The test that definitely proved I had MS was a Lumber Puncture, the results from this test confirmed my diagnosis. 5 and a half weeks in total!!! I’d definitely write things down and any questions you may have in case you forget when you are in there. I hope all goes well

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As my sister says “it’s doing my head in”.lol. I hate the waiting, I know that I have one leigon, don’t know about the spinal tap as yet. I phoned the neurologist PA, I got through:-). She looked at the letter and said that the neurologist put maybe have a MRI. As they don’t like to do them to close together, although I haven’t had a spinal one So it looks like I have to wait until April. Your diagnosis was very quick. Mine. I have been waiting since February 2018 with my double vision but since November when I found out about the legion’s. So for me it’s six weeks more of waiting.:frowning: I think that it’s great that you have got your diagnosis so quickly, you now know what’s happening and that you can have treatment. So good on your doctor and hospital. NHS at it’s best. Not the kind of news you wanted, Good luck Kay

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It was very quick considering I didn’t have any other symptoms and yes lucky to get answer but not nice news. I think it was so quick because I was admitted and when I kept asking if I could go home, the ward doctor kept telling me I was best to stay in hospital and get ALL the test done while I was in there otherwise it would take months having them done as an out-patient. I did have to wait 3 months to wait to see my MS Nurse but she was lovely and answered lots of my unanswered questions. After being given the “news” I was told to wait for another neurologist appointment and for a letter to see the MS Nurse - I wasn’t even given a leaflet to read!!! I hope you get an answer soon, like you say, at least once you know you can start planning things and get treatment. Good luck to you both

7

GP visit went well, the GP was very respectful of my extra needs and seems kind. I’ve been prescribed Gabapentin and and an urgent referral to neurology has been made. My health and functioning has become even worse than it was when I wrote the initial post so triggers aside I’m almost looking forward to it.

Thanks for the helpful responses.

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That’s good to hear, I hope you don’t have a long wait. I also hope the medication works. Kay