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freaking out

Hi everyone ill try and make this as short as i can.

around may time i had pins and needles down the left side of my body , mostly my legs but also had it in my arms and hands. after i had this a couple of weeks i went to the doctor who asked me a range of questions about vision, tiredness etc. the only other thing i had was tiredness (nothing too extreme). he mentioned MS briefly and said he would take bloods. he rung me when my blood results were back and they were all clear so he said he would send a referral to a neurologist.

now i couldn’t tell you when this went or even if it did go or i got used to it but i didnt think about feeling unwell for a couple of weeks and certainly didn’t think about the pins and needles

fast forward to roughly the beginning of august and my eyesight started going blurry. anything to do with my eyes and i panic so i booked an appointment with the optician straight away. at this point i had totally forgotten about the doctor asking me about my eyesight during my appointment so didnt connect the two. i had a slight prescription nothing major, infact i cant tell much difference when im wearing them to not. my eyes were still going blurry but i thought i was maybe overtired, hayfever etc and because i had them checked i didnt know what else to do about them

about a week ago the pins and needles came back but a lot worse. also in my face and feet this time. its a weird sensation like prickling and like my body is on fire. anyway its really bad and been keeping me up in the night so i went back to the doctors today. she asked me about fatigue (im tired but nothing too extreme) and she asked me about my vision (which triggered me into remembering that the doctor had asked me about it before). i told her about my eyesight and then she went on to ask me about being dizzy. well i have been dizzy but again didnt connect this but only when im walking around.i told her and she said that the referral did go through in may but she will add notes onto it so hopefully it speeds it up.

so what do i do?? go and google things and now im convinced thats what i got. ill be ringing for a private appointment tomorrow as i cant cope with the unknown. im absolutely petrified.

sorry for the long post just feeling anxious

jodie

hi jodie

first of all - don’t panic and don’t let stress take over.

knowledge is power, they say, so once you find out what is causing your symptoms then you can begin to address it.

it could well be MS but wait until you are told by a neurologist because there are other possible causes.

as for a private appointment you will need to see a NHS neuro for treatment so why not try to be patient and wait for the referral to go through?

having said that September to May is a ridiculously long time.

stay off google or you will be filled with lots more worries, before my diagnosis i became convinced that i’d end up losing a foot! at least that made me glad to be told i had ms .

now work really hard to stop anxiety taking over, the last thing you want is a mental illness to deal with.

talk to your GP about it and s/he may prescribe a mild anti-depressant.

good luck and let us know how you get on.

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Hello Jodie

As Carole says, don’t panic and try not to worry too much or drive yourself loopy by googling MS.

You should probably make sure your local hospital has the referral. May to September is ages for a referral; you should at least have had a letter telling you they have the referral, even if you’ve not yet been given a date. If you phone the hospital and ask for their appointments team. Ask them have they got the referral? If so, when are you likely to get an appointment? If it’s still ages off, get back to your GP and ask her to re-refer ‘urgently’. And if they don’t have the referral, again ask your GP to send another urgent referral.

In terms of a private neurologist, that won’t ultimately gain you very much. You’d see the neurologist quickly, but if they agree that there’s a need for diagnostic tests, these cost an arm and a leg. Unless you have pots of money, you’d need to get an MRI done on the NHS and as for a lumbar puncture, evoked potentials, nerve conduction, and any blood tests, you are possibly taking about a couple of thousand pounds.

Then, even if the private neurologist diagnosed you with MS, disease modifying drugs cost at least £9,000 per year (often more like double - that’s a conservative figure). So in order to get a DMD on the NHS, you’d have to be diagnosed by the NHS.

So, chase up your NHS referral. You could be lucky and get a cancellation appointment.

Obviously if you have private health insurance through your work, or privately, see what that insurance covers first. You could find the tests are all covered. In which case ignore what I’ve said. Apart from the cost of DMDs. They are very unlikely to be covered by private healthcare. And in that case, the NHS neurologist might still want to independently diagnose you (send you for all the tests etc) before declaring the same thing as the private doctor.

Meanwhile, if you want to know about MS, don’t randomly google it. Use this site (the tab at the top marked ‘About MS’) or the MS Trust. That way you’ll have accurate information. Just remember, you don’t have MS until a neurologist has examined you, agreed that you might have a neurological cause for your symptoms, referred you for tests, had all the test results back, called you in for a follow-up appointment, scratched his or her beard, and finally, given you some definite news.

If you need to know more from us lot, just keep posting, we’ll do our best to answer questions and queries. But remember, we aren’t doctors, treat whatever any of us say as anecdotal. That is, not solid proof.

Good luck.

Sue

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Thank you both for you replies. I really appreciate it. I am staying off google from now on because that’s no good for my stress levels and the last thing I need is to be stressed on top of all the other symptoms im getting. any information I need I will get from here as ive read through posts and a lot of them have been helpful :slight_smile: as for going with the nhs I feel like 10 to 12 months is a long time to wait. i am very impatient though. im slightly confused with going private and if that will affect me going back to the nhs. ive been told I can do that. to be honest I can afford the approx. 250 for the first appointment but anything else would be impossible for me to pay so a bit stuck on what I should do. feel like my head is in a spin as even though I have got a lot of symptoms maybe im jumping the gun and it could be a wide range of things so that’s why I want to be seen quicker. how long did it take to be diagnosed if you don’t mind me asking?

I’m a different case to many as my MS is now nearly 23 years old! Initially I was tested and told I didn’t have MS. Even though using today’s criteria, they could have diagnosed me straight away. But as it wouldn’t have gained me anything, I don’t hold it against the doctors. It was eventually 5 years later (and several mysterious to me relapses) that I went back to a neurologist and was diagnosed very quickly. In fact, when the neurologist asked me what I thought, I said ‘I think it’s MS’. He said ‘so do I’. And that was before any further testing - just the information from the first set of tests and my relapse history. But that was the same year that disease modifying drugs became available for the first time (2002). So I’d lost nothing by the delay in diagnosis.

With regard to your situation, I’d first try and hurry up the NHS. As we’ve said, 4 months without even a date for a neurologists appointment is too long. If it’s impossible at this point to get an NHS appointment, then by all means get your GP to refer you to a private neurologist. The way I’d suggest you do this is to see if there’s an MS specialist neuro at your NHS hospital who also has a private practice and ask for a referral to him/her. (If you see your hospitals website, there’s usually a list of consultants under departments. Once you have the name(s) of neurologists, you can google them and see firstly what their specialisms are and also if they have a private practice.)

Simultaneousy, ask your GP to refer you urgently to the same neurologist on the NHS. Obviously, your private appointment will be very quick to arrange. If the neurologist thinks as your GP does, at least s/he will write to your GP indicating which tests they’d advise. Your GP could then refer you for the tests (MRI for example) without waiting for the NHS neurology appointment. Then when you see the neurologist on the NHS, some at least of the tests will have been done.

I hope some of this is useful to you and that you are seen very soon so at least you have a professional neurological opinion as to whether you should be concerned about MS or not.

Sue

Hi Jodes, you’ve had fab info & advice from Carole & Sue. Please contact the Neuro dept on Monday, 16th Sept. Check where you are on the waiting list to be contacted and ask directly when you can expect to see the Neurologist and their name. Incidentally, if you know the hospital, check the names of all the Neurologists who work there and try to decide the best qualified in their specialised field. Some specialise in M.S, others in Strokes, Parkinson’s etc. All will have some knowledge of MS but not necessarily specialise in it. Your friend may be able to help you choose). When you know how long it will take for the nhs appt, think hard whether to wait or spend on private appt. It’s expensive!

Once your first NHS Neuro appt is done, all tests & follow up appts will be carried out. You will be able to build a relationship with the Neuro and their secretary. A great bonus is to phone & chat to the Secretary on any weekday to ask for an update.

I understand your worry and frustration, but everything takes time and patience (hard to keep when you’re scared stiff eh). Don’t just accept waiting for a letter or phone call, keep chasing up.

For me, it took over 11 years from my first symptoms to MS diagnosis and another 2 years to confirm the type is PPMS. A lot of delays 'cos I didn’t have a clue what MS is & I hadn’t a clue what they were testing for. MS didn’t cross my mind. I know my records were mislaid a few times too. Whilst working in the late 90s, I became forgetful & very tired. Over the years I saw GPs. In 2004 I saw a Neuro-psychiatrist (he pointed to his phone & asked me if I knew what it was! Then same with a pen! In 2005 a Cat scan showed all clear, the MRI showed a lot of inflammation of white spots. Nothing was explained to me. After seeing him for 3 yrs I’d got nowhere, so I insisted on seeing another Specialist. My records were mislaid twice by the NeuroPsychiatrist. He sent me to a Rheumatologist who diagnosed Fibromyalgia. A year or two later, I lost some vision & speech for 4 or 5 minutes and was sent to the Stroke clinic. The new specialist was very thorough and, at last, in 2009 I saw my first Neurologist. Many tests & waiting around was needed. Eventually, in Nov 2011, I had a diagnosis of MS. 2 yrs later, it was confirmed as PPMS.

I hope you find others’ experiences help to understand how different each case is. How patience drives us all nuts but it’s a slow process to eliminate all other possibilities.

Take care Jodes, take notes of everything unusual, even a diary of sleepy times etc.

Best wishes, Chrissie x

Hi Jodie, I am also new here but reading about your experience is like reading my own word for word. The only difference is mine started at the end of July. It started with pins and needles down my left side progressing up to my face. My vision has gone a bit funny and now I have sharp pains down my back. Just to let you know that I have gone the private route as the stress of waiting was making me ill. I’ve just had my MRI today and I am seeing the consultant on Thursday for results. This has cost me nearly 1000. I am happy to share what happens but I am prepared for MS as much as I can be. If it is MS then I should be able to stay under the neurologist on the NHS. The cost for me is hard. I have had to borrow the money but the wait was sending me under. Kate

Good luck for results day Kate.

I’m really glad someone has shared the cost of seeing a neurologist and having an MRI privately. People quite often debate seeing a neurologist privately and we end up saying how expensive the tests are but not knowing exactly how much!!

But if you can just about scrape up the money I can see it’s too difficult to wait for investigation.

Come back and tell us what happens on Thursday.

Sue

Hi Sue, I will let you know what happens! Full cost for MRI was £550 as it was brain and spine. Cost of initial constant appointment and then then the consultant follow up appointment after the MRI came to £400. This will most likely be the end of what we can afford privately but hoping it gets me far enough along the process I can feel a little calmer. Kate

Thank you again for all your replies I really appreciate it. I’m finding it all very helpful. I rung the nhs hospital today and they told me it will be about 12 weeks. I rung the private hospital and it would cost me £250 and the next available appointment was 5th novemeber so not a lot of difference in the time to wait. when I was on the phone to the private hospital I asked her if I would get seen quicker on the nhs if I had that private appointment she said no so im still slightly confused. ive decided at this point in time I am willing to wait for a sake of a couple of weeks. Today my pins and needles are really bad on the one side of my body. feels like my body is going numb. after hearing how long some of you took to get diagnosed I feel like im being very impatient. maybe I am jumping to MS a bit too soon but after reading about it I am having the symptoms and especially after the doctor mentioned it im feeling like they think that’s what it is. Kate- good luck for Thursday. please come back and let us all know. it sounds like your story is similar to mine.

jodes you need to talk to the neurologists secretary (private one). i would get seen in TWO DAYS. If i went private to see him.

hi kate did you got to cheltenham cobalt centre. I paid for my first MRI it was 250 for brain.

are you glouester based. winfield Dr Martin he is the best. x

Good point CC, but if Jodie can only afford the initial private appointment, and not any tests required, then spending £250 is money wasted.

Best of luck Jodie. Hopefully you’ll find that you’ve not got MS or any other neurological illness and this period will vanish into the mists of time like a bad dream.

Try not to worry too much while you’re waiting.

(But if you feel like the symptoms are just getting worse and worse and your mobility becomes severely affected, ultimately you could always head to A&E - that way you’d be seen by a neurologist a bit quicker!)

Sue

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the one private hospital is the 5th november and i spoke to another one today and the next appointment is the 19th december so looks like i will have to wait it out. :frowning: i find it strange i would have to wait so long to go private i was under the impression it would be a couple of weeks.

im going to try and not worry as im currently in the middle of selling my house and a relationship breakdown so got a lot going on.