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New neuro - new outlook towards my diagnosis and he listens - at last..........

Hi Everyone

Just thought I would post this as I actually finally feel that all of this is not actually all in my head. I’ve been hanging around in and out of limbo for the last 12 months and have finally found a neuro with a different approach to diagnosis. Or even one that has looked at my notes properly and has actually listened.

The neuro I saw at this weeks appointment looked at my doctors notes, carried out basic neuro tests, checked my MRI results, lumbar puncture result and confirmed my suspicion that my current (now ex) neuro really is living in a different world!

He cannot believe that with all of the evidence which they (ex neuro) have collected, that I do not have a difinitive DX and have not been started on DMDs, which in his words, should have been months ago. He also cannot believe that I do not have a dedicated MS nurse to turn to in times of need.

I have had to go outside of my local area to see this neuro as the clinic I normally visit, cover a large area.

His approach towards treating MS is to treat it aggressivley and is the same school of thought as the london neuro (who wrote a piece for the times newspaper the other week). He also believes that DMDs shoud be offered after one clinical attack.

All I have to do now is persuade my GP to refer me to him and also hope that my health insurance do not consider my MS investigations as a pre existing condition and pay for a official referral.

Wish me luck!

(posting anon to protect the innoncent…)

sounds like your ex neuro is my neuro,poo is all i can say

Summat `ere I dont understand chuck…

if you`ve already seen this fab neuro, why would you need your GP to refer to to him?Am I missing summat?

pollx

Hi Poll

It was a referral from a 3rd party company who were paying him (not me) to assess me to see if what happened to me could have triggered the MS episode which I had. (bit of a long story but a car was involved).In a nutshell it didn’t, as I have a fairly long list of clinical history of MS related events.

Its an eye opener though, how one hospital trust can do things one way and the other one be completely different. A complete postcode lottery. I just need my health insurance to pay for the referal to him so he can send me for an MRI with contrast to prove the disemation(sp) in time thing. Which he can’t believ that I haven’t already had under the clinic I am under.

The problem is though, because my ex neuro has dragged his heels and messed me about for so long, they might class the condition as pre existing and not pay for the referral. I’m skint, so would have to take out a loan to pay for it, or rob a bank…or two.

Does anybody know if you can ask to be referred to a specific doctor outside of your local area for treatment? If so how easy is it?

Yes you can go anywhere in the country for treatment providing your GP is willing to make the referral.

Not sure I fully understand the thread but I too was involved in an car accident and had various opinions about what had triggered what and what was actually wrong with me. Unfortuanatley, the crossover between them and the nhs was non-existent and they often disagreed with each other. Finally, after 5 years of grief, I am back with the nhs and starting from scratch afterall it is the nhs who will take any action forward not specialsit employef by insurance companies, who lets be honest are trying to get the most out of a claim, or not in my case. Perhaps you could pay privately, with him aside and then get him to transfer you under his care. I hope that makes sense. If I have got the wrong end of the stick, sorry. Lou x

LouLou

You are correct, the insurance companies have/ did try to suggest a connection between the two as they both happened within weeks of each other. As always, the insurance company has $$$$$ signs in their eyes and like they do are/ were going after a big pay day. I am/was always fairly certain that any such belief would be quashed as it has done in the past. Even recently a police officer got awarded a large payout on such events, only to have the ruling overturned at a later date. The neuros assesment this week has quashed this theory too and his report will state that I suffered a minor neck injury during the accident and also started a major relapse around the same time. There is very little evidence which can connect the two.

I have tried to use the insurance company to my advantage and they have paid a premium (which I never could have afforded) to have me assesed by a neuro who has given his opinion on the matter and thankfully has “off the record” given me his two pence worth with regards to my ongoing diagnosis. It has/ will also given me the opportunity to attempt to move my currently non existant MS treatment over (hopefully) to a neuro who actually seems to care and wants the best for me.

If I am unable to transfer across to him (in a different town) under the NHS, then paying for a private referral might be an option. However, like I said before, I do not have the funds to do this at present.

I know its the NHS that will ultimately take things forward and provide the eventual diagnosis and treatment, but currently I am stuck under one particular NHS trust, who in my opinion has one heck of a lousy neuro and process for diagnosing MS.

Hopefully this will change.

X

Just a thought and this is where I am at. I believe, ‘although you have got to get your doctor to agree’, that under the patients charter you can see any consultant you want to any anywhere. I have read in other threads that some are travelling some distance 1 or 2 hours to see more proficient neuros. I am currently, doing some research and I am prepared to travel. If your case is now closed, which I would imagine it needs to be, as there could be a conflict in interest, I would definetly ask your gp if he can refer you… the fact that he said it off the record, does that mean he didn’t put it in writing, as that might make it difficlut to convince your gp to refer you outside the area. On cost I have been quoted by my practice secretary, that an initial private consultation is around £150. You can ring the consultant’s secretary you have in mind and she will be able to give you an idea of his rates. Not an easy one but I hope you get sorted. Lou x

Why do you have to go private? can’t you just get your GP to refer you on the NHS?

Sorry got thrown off net…can’t remember what else I was going to say!