Struggling to cope with not knowing

New diagnosis and before diagnosis
1

Hey everyone

I am 44 years old and live in Republic of Ireland, though was born in UK.

A year and a half ago I started having real bad dizzy spells. The doctor took blood tests, and they came back that I had large red blood cells, so I had to have another blood test for B12 levels that came back normal.

Nothing more was said, but then last April I collapsed in town. All my left side felt like I had pins and needles and the dizzy spell I felt was really violent. I went to the hospital and they took bloods and a ct scan, but nothing showed up. They kept me in overnight. The following day the doctor I was under said it was a probable TIA, and gave me a prescription for Aspirin. She also arranged for a MRI which I had end of July, this also came back normal.

My doctor sent a referral for a Neurologist in October, but they have sent a letter saying I could be waiting a year or more.

My doctor has also said that I am not to keep going to the doctors as there is nothing she can do for me

The problem is that I have constant pins and needles in my left arm and leg. Now and then I have muscle jerks in my left arm and then I feel real dizzy, and it feels like my eyes are shaking in my head to the point I can’t see properly.

My arm feels like a dead weight most of the time, and recently my partner made a comment that it looked like a fake arm because of the way I was holding it.

I have suffered with depression for most of my life, but since all the symptoms have started it has got a lot worse. I don’t know if its because of the symptoms or because I feel there is nowhere to turn for help. It has got to the point that I don’t care if I die, and have had feelings of wanting to end it myself.

All I get at home is “Go to the Doctor”…but the doctor has already said she can’t help me until I have seen the Neurologist. So my home life is just constant arguments. I really feel like I have no support.

What I would like to ask is, do I have the right to demand some treatment for my symptoms, even though I am not diagnosed with anything yet.

Also if the symptoms I am experiencing could be a sign of MS, and if that’s the case, should my doctor be doing more to help me, or is it really a case of me having to deal with it, because I really don’t think I can

2

Hiya Gayle,

Your GP sounds like an arsehole but they are what’s written on the bottle; GENERAL PRACTITIONERS. They probably only see about 6 people with MS their entire career. On saying that it does not look like he/she has any bedside manner being they know you have such a long wait.

If you can afford it go private; cost about ÂŁ300 for your initial appointment but all further appointments; treatment; tests and hospitalisation you want on the NHS. This was made legal about 8 years ago; you do not need referral.

Can’t say you have MS; only a Neurologist can but some tests first, see A-Z of MS | MS Trust

I’ve been diagnosed for 44 years and had a brilliant life. If it is MS it does not close doors; much the opposite; you can do things a healthy person could not.

All the luck in the world,

George

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3

Oh dear, I can identify with you and not knowing what is causing your symptoms.

After 20 years of tests and regular appointments with 16 different neurologists, i still have no diagnosis.

I was wrongly diagnosed with MS and HSP…Both of these have been squashed!

In your case, I think your GP is wrong to tell you not to go to him again.

Perhaps you should write to your local health ombudsman.

Pollx

4

Hiya Gayle,

As Poll say’s contact your Health Authority and say the NICE guidelines call for a rapid diagnosis; I don’t think anyone could say 1 year is rapid? Multiple sclerosis in adults: management | Guidance | NICE

George

5

She’s in Ireland though. Is there any way you could possibly pay for an appointment with a private neurologist. (Although I think I remember other posters in Eire saying that there were still quite a lot of delays with that there as well.)

6

i am in eire last year my gp referred me to a neuro privately cost 170eu waiting 6 weeks because she was on hols

i must say your gp sounds like a total a/hole

even if they cant diagnose they can at least be civil and try and reassure you

12 months is a total disgrace

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7

Hi Gayle. Some GPs are a delightful breed, aren’t they?

I’m in the south west of Ireland and have to say, am very fortunate with my gp and my Neuro. Then again, as regulars on here know, I won’t take shite from anyone and don’t “do” hierarchy.

I suggest you make an appointment with the gp once more. If you feel undermined or intimidated have your husband or someone confident with you for support. Tell her, (don’t ask her), tell her you want another referral letter to go to the Neuro as you will be paying for a private consultation. The long wait is having a detrimental effect on your emotional state and your life. If you don’t already know, ask who the Neuro is and where he/she operates from. Ask for the number of the secretary also. If this is too much for you to take on, on that day, phone the hospital and ask for the Neuro’s secretary yourself. She will be able to tell you the cost of an initial consultation. Private it’s €150. Worth every cent for some answers and civility and perhaps a diagnosis a little faster.

I’m not even sure if you need a second letter. The secretary may be able to arrange a private appointment on the basis of the last one. Maybe phone secretary first and you might be able to arrange private appointment that way, as there is a referral letter there. You can be seen by the usual HSE route for further treatment after that. Though if necessary a blinking loan is worth it for a private mri to compare with the previous one! Here where I am the wait for an mri is three months. Private is three days.

Best of luck.

8

Thank you all for your kind words of support

I am in Enniscorthy County Wexford. I have been referred to St Vincents in Dublin, still no letter for an appointment, only a letter to say I am on the waiting list.

The last time I was at the doctors (3 weeks ago) was for my repeat prescription for depression tablets. I was experiencing pain in my arm…like when you get them pains in your legs and your mum would say they were growing pains. She said that pain is not associated with Neuro and had me doing all kinds of movements with my arm to see where the pain was coming from. She then gave me some pain killers but they don’t work.

I am actually thinking of going private but we are on Welfare at the moment, and I have no clue where to start. I woke this morning feeling dizzy and a bit disorientated, and I am starting to wonder if I am having attacks while I am asleep, as its not the first time.

Is there another place I can go thats nearer to me other than Dublin?

9

i dont know for sure but it might be worth checking with waterford hospital to see if any neuro experienced in dealing with ms patients practice out of there

if ur gp was any good he should know this for you anyway

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She referred me to St Vincents in Dublin, could not be further away :frowning:

A friend of mine suggested a Neuro in Wexford…will cost 200 to start and then 90 there after, I can’t afford that kind of money sadly. I wouldn’t mind paying the 200 but can’t afford 90 for every appointment after if needed.

Really dont know what to do for the best.

11

its hard when you want answers yesterday

thank god my issues turned out to be non ms related but i was worried because of the symptoms

one piece of advice i was given and i think it will have to apply for you as well make sure the neuro you go to is experienced in dealing with ms issues not all are from what i am told

12

I went private for my initial consultation and then went NHS.Could you do that?

Pollsx

13

Really not sure…I am going to grit my teeth and go back to the Doctor and ask her to chase it up.

14

Im in eire as well, in kerry, my first neuro apt I was told would be 6-9mths wait. I went back to my gp, who is very understanding I must say, she sent a letter asking that i be move to urgent and in the meantime I asked her to send me a private referral for which I waited only 3 weeks and cost €140. I know it seems like a lot, but the relief I got from being proactive and talking to the neuro was worth it. She wanted to order mri, which I decided to wait on public list. Its different in Ireland, if you go private and then decide to go public before any diagnosis, you’re back at the end of the queue and start again with another initial consultation!.. but I rang the hospital and I had about 3mths left so I decided to wait it out. Saw the same neuro on public (there is only one covering this side of the country!!) And got mri done within 6 weeks. My personal advice would be 1-change gp asap, they have to be your advocator and if they tell you not to come to them well that says it all about how well they will look after you. 2-phone the hospital, ask where you are on waiting list if you havent done so, talk with the neuro secretary and explain how bad you feel, its worth a try. 3-if you can, at all gather the fee while you’re waiting, go private for a consult, and that doesnt have to be in Dublin, can be whichever private neuro you want… My husband said to me, at the start of all this “we would spend that money without a second thought to get the car ready for nct, and you’re hesitating to spend it on your health”, beside the fact that he was comparing me to his car, I thought it made a lot of sense :relaxed:

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Apologies for msg without spacing, no matter what I type on phone, it deletes the spacing!!! Kinda thing that ennoys me of a sunday morning!

16

Aissa. I believe we share the same neurologist. Not everyone’s cup of tea, but I think she’s great and have forged a great relationship with her.

Love your husband’s way of thinking. :slight_smile:

17

Thank you very much

I will do what you have advised. It looks clearer when someone else says things, I feel a lot better so thanks again to everybody :).

18

i believe i had the same neuro as well she operates out of tralee but has a monthly clinic in barringtons limerick

her initials would be hm first class and tells it to you as it is

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