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Doctor wont diagnosis thinking of going private

Hi Everyone,

I’m new so please bare with me x

I’ll try and keep it short but basically my husband has been ill for years now :’( He was first ill in 2003 lost feeling in his left foot and having pins and needles in his hands which he still has, over the years his eyes have gone bad and lost all his energy

He has:

optic neuritis in his left eye and his right eye is getting bad now

He has a brain lesion - demyelinating disease

positive o bands in spinal flued

overactive bladder

nystagmus

balance problems ( cant walk far and when he does walk he walks like hes drunk)

He’s very pale

he’s heart rate is between 80-140 ( resting )

Just to list afew :frowning:

But Everytime we see his consultat neurologist he just fobs us off saying ‘NO its not ms you would have more brain lesions which we know isn’t true ) then at one point last year he tested him for MNO which came back negtive, when we seen him in July i told him i was recording the meeting and he knew i was angry and i asked him again ( Is it MS or not?? ) and he’s answer was could be or not!! I asked to see someone else i was really mad that it was playing with our lifes :’( so he sent us to a MS speciaist in manchester ( whom we seen in December and again hes not sure but put my husband on tablets ( which we were told were to stop any relapes ) but we later found out they are tablets being trailed for a patent thats undergone a transplant :confused:

So since xmas my husband has gone down hill fast, hes white as a ghost,falling over by only walking to the kitchen,resting heart rate between 100-170 we have even had to take him to the hospital twice because his heart was beating that fast.But the specialist at the hospital said if he had a bed free he would take him in but we all know what the NHS is like

He’s next appointment is march so we have to just wait and in the mean time hes getting worse

my question is would you go private for a disgnosis? i dont think my husband can take another ’ we will see you again in 6 months from the specitalist in march’

Please please we need any advice we can get… we feel like we are just getting fobbed off all the time in the meantime my husband is getting worse and we have 4 children :frowning:

it is awful that your husband and you have been left to flounder.

i saw a consultant at salford royal who diagnosed me after i had 3 days of IV steroids.

these had such a positive effect that once it had worn off and i was back to stumbling, he diagnosed me with rrms.

it’s a lot of money to fork out for a private appointment when he’ll be seeing his neuro in march.

make sure that your gp is aware of his decline, maybe he or she could forward some details to the neuro.

tell us the name of the pills for transplant patients that were given to your husband and someone will know if they are used for ms.

now you need to look after yourself because you are obviously stressed.

stress will make you ill and that won’t help your husband.

take care

carole x

I would suggest discussing things with your gp first and logging new symptoms. You could also try putting things in writing to your gp stating you want copies added to the notes. Keeping it polite and expressing your concern for health, list all symptoms and the issues over the years and ask whether they can push for an earlier appointment or be referred to someone else. Send it by recorded delivery and make an appointment to see the gp sometime after so you can check it’s on his notes and what their suggestions are for next steps.

Email is a good way of communicating, because you can send a copy to your GP’s surgery, and to your neuro via their secretary… and copy in yourself.

I like this because I get a copy of everything discussed, and date, AND they can both see that the other one got a copy, too…

Anne

Hope you wont mind my asking, how old is your husband and what was the GPs opinion on the high pulse rate; has he prescribed something for it or think it unnecessary? Has he had MRIs of the spine as well as the brain?