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dh has been ill for months and keep getting fobbed of by doctors

(29 Posts)
WeAllHaveWings Tue 21-May-13 21:41:38

dh has been ill since about January. he is self employed in a physical job and hasn't been working much so money is becoming a huge issue (no sick pay and business bills to pay).

He's been back and forward to the GP about 6 times. He's been in an ambulance once with his symptoms and in A+E twice and seen by the acute admissions consultant. Had 3 sets of bloods taken and nothing found. Been in to do an assessment of his heart (on a treadmill) and everything was ok.

Every time he goes back to the GP, its the same, he's told he's "likely to have/had a virus and his body is run down fighting it" and that's it. Been told to take a good multivitamin hmm to help.

He's got another appointment on Thursday. Any advice on how to get something actually done?

Some of his symptoms (doctor has been told all this) are:

- Extreme fatigue
- Numbness in both arms and legs (not all the time)
- Shaking in arms and legs (seems to get this even more when he skips/is late for a meal, was getting it every day or two at one point, but now he is making an effort to eat regularly it happens less often). Sometimes it was very bad and he also gets a tightness in his chest (the worst time this happened was when NHS direct called the ambulance)
- Pins and needles/tingling in both arms and legs
- Dizzyness/feeling as if he's going to pass out
- Pain when hands in cold water (does this as part of his job)
- Lack of strength in hands (can press down hard on things which makes working impossible)
- Hyper sensitive to sound (cant listen to TV, cant cope with ds(9) being noisy, sometimes cant even cope with normal conversations)
- Buzzing noise in ears/head
- Headaches
- Sensitive to light
- Problems sleeping

Most nights and during the day when ds and I get home from work/school he now goes to the spare room just to lie down and get away from the noise or because he feels dizzy or his legs and arms are feeling numb/tingling again.

What can we do to make the GP actually do something (been to 3 GP's in our practice).

It has been going on so long now dh is so anxious there is something seriously wrong, and can be irritable (or maybe that's another symptom). ds(9) is being strange around him and is really missing his dad that would play and wrestle and take him to footie.

We are in Scotland if that makes any difference.

If you got to the end, thanks for reading.

VivaLeBeaver Tue 21-May-13 21:49:43

My dad had some but not all of these symptoms and also some different ones. His came on very acutely.

He had vomiting, extreme tiredness, very bad headache, aching joints, pressure in his head, pins and needles in arms and legs, dizziness, buzzing and ringing in ears, total lack of strength in his legs - unable to walk, very weak hands. Also extreme sensitive to noise, noise would cause him terrible pain inc normal conversation.

He was admitted to hospital as it came on very suddenly and severely and after a few months in hospital they eventually diagnosed him with vasculitis but afaik I don't think they every pinpointed which type of vasculitis. There's different types and symptoms for each are all a bit different.

It might be worth asking the gp about? See if they can refer to an endocrine type person which I think is the speciality.

The being sensitive to noise has a name, its called hyperacusis and is quite unusual. Dad met a dr who was writing a paper about it and he seemed to be the first one to know what it was called. It's was after several ENT appts and a year in and out of hospital.

I hope he gets better soon.

WeAllHaveWings Tue 21-May-13 22:09:09

thanks viva, problem we have is the GP's aren't keen on any suggestions put forward.

I have done a lot bit of Google , especially with the extreme noise sensitivity, and the first thing it took me to was Lyme's disease (from a tick bite) and that ties up with a lot of his other symptoms. dh has a work shop which is a converted barn on a farm (west coast Scotland) so is near sheep, possibly rats etc so could have be exposed to a tick bite.

He has been to 3 GP's who all say the same thing, so we can't ask for a "second opinion". Can we insist on referral to a specialist? and if we did what kind of specialist would we ask for?

Or does anyone know how we would go about getting a private appointment somewhere in Ayrshire to diagnose?

I was made redundant last year and am so pissed I paid thousands of pounds into the company BUPA scheme over the years and never used it. Now a few months after I stop paying we bloody need it!!!!!

flanbase Tue 21-May-13 22:14:10

Get it in writing from your gp asap that they have refused you a second opinion and also to write down what their diagnossis is and what basis and sign and date it with a list of your previous visits. This should get you a referral. The nerve sympthms would say go to a neurologist and have an assessment.

geologygirl Tue 21-May-13 22:17:08

Yes I agree with neurologist as well. Symptoms point to nervous system and brain. Good luck

cocolepew Tue 21-May-13 22:19:26

Definitely needs to see a neurologist.
Good luck.

VivaLeBeaver Tue 21-May-13 22:21:12

www.dailymail.co.uk/health/article-2087910/Mother-discovers-familys-illness-comes-insect-bite-20-years-ago.html. It's woman paid privately for Lyme disease blood test. Might be cheaper just getting a private blood test initially.

You can firmly ask your gp to refer you. Mmmm, not sure who to, maybe an immunologist?

Has ME been mentioned/discounted? That's something which can cause tiredness and is hard to diagnose.

VivaLeBeaver Tue 21-May-13 22:22:31

Ooh yeah, neurologist sounds better! grin

WeAllHaveWings Tue 21-May-13 22:23:38

thanks flan, that helps, we are never at the doctors (dh hasn't been to doctors for 10+ years!) so don't know how to handle this

so we should ask for a referral to a neurologist (or maybe an infectious disease consultant??) and if they wont refer, ask for it to be written down and signed/dated and say this is because we are going to take it private because they wont refer us?

flanbase Tue 21-May-13 22:27:00

I would get this from the doctor so that if anything was wrong and the doctors tried to cover their backs you'd have a written evidence to prove that you had asked for help and had asked for a referral.

WeAllHaveWings Tue 21-May-13 22:36:18

viva stories like that one keep convincing me its lyme.

ME hasn't been mentioned, all 3 GP's have said its a "virus" and basically fobbed him off.

he's in such a state and they are treating him like he's got a bloody cold sad angry. I have told him I want to go to his appointment and sort them out but he wont let me........

flanbase Tue 21-May-13 22:41:49

Hope you can get an appointment or a private doctor to do a lyme blood test and a full check up to see what is the matter. Best wishes

WeAllHaveWings Tue 21-May-13 22:44:00

think I will type up a list of all his symptoms for him to give the doctor to make sure they have absolutely everything documented.

will also put on it the length of time he's had them for and impact its having and asking for referral to either a neurologist or ask for testing for lyme again.

if they do refer can we insist on an urgent appointment? (it took 4 weeks to get the heart assessment done)

if they don't refer will ask them to document and sign/date their diagnosis so we can give to a private consultant.

any more ideas?
any GP's online who can give advice?
anyone know where we find a private consultant? BUPA? yellow pages?

flanbase Tue 21-May-13 22:52:54

That's a good idea on the typed list of symptoms. A neurologist can do a lyme disease blood test and a full blood test but the gp might have another idea on the specialist to see asap. I hope you don't have to wait long.

WeAllHaveWings Tue 21-May-13 22:53:59

thanks

Perihelion Tue 21-May-13 23:16:37

Have been tested for Lyme by GP in Scotland. Although there is some controversy over whether the results can give false positives or negatives. And whether the NHS tests for all the markers.

moonblues Tue 21-May-13 23:40:40

I would go with your DH to the appointment and ask directly for a referral. I think most GPs would do this without any argument, though it may be longer than you would want to wait to see a neurologist. Also ask about testing for Lymes disease as the GP should be able to arrange that. To go and see someone privately you would still need to be referred by your GP.
If your DH doesn't want you to go with him you could arrange a telephone appointment with the GP to raise your concerns. Do you think you DH is putting on a brave face when he goes in to see them?

BoreOfWhabylon Wed 22-May-13 03:09:43

people might be able to help.

BoreOfWhabylon Wed 22-May-13 03:11:46

Oops, I'll try again

www.lymediseaseaction.org.uk/who-we-are/contacts/

VestaCurry Wed 22-May-13 03:37:39

Your poor DH, awful for him, and you.

I strongly agree with you accompanying dh to next GP appointment, to help convince GP of the clear need for a referral. Typed symptom list excellent idea, take 2 copies, and when you hand over one to the GP, make it clear you have your copy too. Sounds a bit pedantic, but it all helps to show you mean business and are now documenting what are serious symptoms etc. Previous to this, he did not go the GP, so it's clear something is wrong, and obviously you'll need to remind the doctor of this. It's time to get pushy (without being rude obviously).

A symptoms diary, over the course of a minimum of a week would also be useful for your dh to write (brief notes of course, a tick list is good). Get him to do a pain scale of 1-10 too.

Having experienced neurological problems myself, it really does sound like referral to a neurologist would be a v sensible next step. IME, neurologists often have to do a lot of 'ruling out/ruling in' testing so testing for Lyme's fits in. Also, if a CT or MRI is going to help with diagnosis, they order these as a matter of course.

Good luck, I really hope you can get to the bottom of this. The only way to do that is to move beyond the generalist expertise of a GP.

catonlap Wed 22-May-13 13:59:16

"I have told him I want to go to his appointment and sort them out but he wont let me"

Have you been to any appointments with him so far? I am just wondering if actually he is getting the full picture across to the doctors? (Sorry, I obviously don't know your DH but I do know that some men seem to play down their symptoms during appointments and it then tends to be the wife who actually spells it out!) So I do think it would be helpful for you to give some history of the problems to his doctor. Go along with him if he will agree. He if won't let you go in with him then there is nothing to stop you giving info to his doctor. You could speak with his GP on the phone. Obviously the GP cannot tell you any of his medical details without seeking his prior consent but if you explain that you are not after info from the GP and just want to fill them in on some details. If phone cannot be arranged then writing it all down is another option. That way the GP could question DH on your written list of symptoms and it might help to guide the discussion.

You say bloods have been done. Do you know what has actually been covered on these tests? I would try to find out (get him to find out) what has been covered so far. I would assume they have at least covered the basics like making sure he is not anaemic, liver and kidney function. Blood glucose? Hopefully thyroid function too.
Checking vitamin B12, calcium and vitamin D levels would also be a good idea.

Have you/he mentioned the concern about him possibly being bitten by a tick and hence your concern re Lyme disease? It will not be one of the standard tests but it should not be too hard to arrange.

The other thing that stands out as a possibilty from your list is do you think he could be suffering from anxiety? This could cause quite a lot of the symptoms including the problems sleeping, the irritability, the pins and needles, chest tightness. It might help to reflect on this which is a helpful guide and mentions a list of symptoms which might help you to decide if this applies to him or not.

If non of the above give the answer then the best specialist to see would probably be a neurologist because they deal with many of the symptoms on your list. The other specialist who could be helpful here though is ENT as they frequently investigate tinnitus and dizziness.

cocolepew Wed 22-May-13 15:52:19

TBH if you want to be seen quickly paying is the only way this will happen.
You can phone a neurologists secretary at any hospital and book a private appointment or phone your local private clinics/hospitals and book it that way.

When I was looking for a gynae dr I googled them to find one that I thought would be able to help me the best.

WeAllHaveWings Fri 24-May-13 19:46:53

Dh had his appointment yesterday and it went much better.

Dh went in with my complaints his typed up list of symptoms. He hasn't seem this GP before, and she agreed it’s been going on for far too long, she has reviewed his notes and all the different blood test results and said there is definitely something going on that they are missing.

They didn’t have time there and then as the appointment was quite long, but she has booked dh back in on Tuesday for a blood test for Lymes (know the test isn’t conclusive as it give false-negatives, but it’s a start). Dh also asked for a referral to a neurologist and the GP told him the consultant he has already seen at the hospital is one of the top guys for the area, so GP is going to contact consultant to let him know that dh isn’t any better and symptoms are continuing/changing and agree next steps.

Dh has another appointment with same GP booked for 2 weeks’ time (it will take this long to get results back) during which dh is to keep a diary of symptoms etc. If she hears anything before then she says she will contact him, but to keep coming back to her, not the other GP’s in the surgery.

Feel much better now things seem to be happening, let’s hope it continues.

Thanks for the support on Wednesday night, was feeling a bit helpless and it really did help thanks

cocolepew Fri 24-May-13 20:59:16

That sounds really positive, hopefully they will find an answer soon.

LoveMyBoots Fri 24-May-13 21:15:47

So sorry to hear about your DH. I hope the blood test result gives you some answers.

The new GP sounds like she really wants to help. I hope she keeps up the positive attitude.

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