Forum

Six years in limbo finally climbing out...I think...

Hi well i went to a private clinic long story. The doctor i saw is an expert in MS and Lymes, ME, environmental issues and other things.

After being with her for over an hour, and prior paperwork i had supplied her with and MRI scans etc, and an extensive neurological testing she has diagnosed me with a differential diagnosis of MS or Lymes. Or MS with Lymes, or MS with a co infection of lymes.

She told me i had failed all my neuro exam and everyone pointed to a marker for MS. Some of the symptoms i have though could be part of Lymes so i am having a full blood count for that and all the co infections of lymes and this blood test will be going to the states.

On 7th June i am to start B12 injections for 3 months for my MS (she is obviously convinced that is what it is), and I have been given a supplement regime to start if i want to which will help my neuro pain.

So i came out of there feeling vindicated and sort of happy.

I actually feel great now too although tired but kind of calm and happy as now I can get on with my life.

Best money i ever spent.

She is very thorough and I had 12 bloods taken yesterday all going to the states to special labs, and I have to get another 8 on the 7th. So if there is another reason why i am so ill we will finally find out what it is.

I dont suppose my doctor under the NHS will recognise my diagnosis but i dont care to be honest, as I can get all the treatment i want anyway without it.

Today is a great day, and if i do have Lymes bring it on…Maria

Hi Maria, that’s great news. I’ve seen you on these boards for some time (few years if I’m not mistaken?) so it’s great that you finally are getting some answers. Fantastic. And sending the blood samples to the States!

If they come back as positive I really can’t see how anyone in the NHS can NOT recognise the dx. It’s a well known condition in the States.

Well done for sticking to your guns even if it did mean having to pay to get some answers, as you say, money well spent.

Take care and hope you don’t have to wait long for the results,

Pat x

Yes i reiterate what Pat has said.

When i suffered ON and couldnt stand light, touch or sound I was advised (by scientist friend) to send off to USA for tinted glasses (after Irlen testing) which came back within 3 working days! New lenses with the right tint and boy did they calm me down. Of course opthalmologists and others laughed at me, but hey ho, I solved a problem which nobody in the nhs cared a damn about. Now I believe theyre being taken seriously for children with dyslexia and other problems to do with sight.

I congratulate you for seeking the truth. Hope your diagnosis for definite comes back with your blood tests.

Im all for seeking the truth, even if it does cost us in the end.

best wishes

bren

x

YAY!!!

Absolutely delighted for you!

I hope the definite diagnosis is just around the corner.

Karen x

Good luck Maria.I hope you get some answers soon.Brenda x

Maria, I’m so pleased someone is taking you seriously. I find it sad that people have to resort to private clinics in desperation to try and get someone to help them.

Are your B12 levels low ? My daughter has B12 injections every three months and you can see the difference.

What does bother me is that your diagnosis may not be recognised by other medical professionals and you are going to have to keep paying money for treatment at this clinic.

Jacqui

xx

Maria, I’m so pleased someone is taking you seriously. I find it sad that people have to resort to private clinics in desperation to try and get someone to help them.

Are your B12 levels low ? My daughter has B12 injections every three months and you can see the difference.

What does bother me is that your diagnosis may not be recognised by other medical professionals and you are going to have to keep paying money for treatment at this clinic.

Jacqui

xx

Maria, I’m so pleased someone is taking you seriously. I find it sad that people have to resort to private clinics in desperation to try and get someone to help them.

Are your B12 levels low ? My daughter has B12 injections every three months and you can see the difference.

What does bother me is that your diagnosis may not be recognised by other medical professionals and you are going to have to keep paying money for treatment at this clinic.

Jacqui

xx

Maria, This is wonderful news, I have known you some time and no one has ever doubted you on any forum I know of. I also paid privately to get a defo dx and never had an issue with the NHS. Although I now see the same neuro on NHS whom I saw in private clinic. Good luck with it all, we all understand how much that validation means. What I was not prepared for was that after years of searching for a defo dx and the feeling of validation subsided, you do still often get hit by the enormity of the dx. So be kind to yourself if his happens :slight_smile: Take care and be well Pat x P.S. Yawn, can I ask for some more info about those glasses from US please, my eyes are a constant problem?

Hi Pat i have a phone appointment with the doctor this afternoon to just talk about the meeting last week and see if there is anything i want clarifying. I still have 8 more blood tests to have done which i am going for on the 7th June.

I still feel good about it all. I just want peace in my life and rest lol.

Its sad we have to pay for something that we have paid into all our life, but if it costs me money and i get peace then it is worth every penny.

Yes those glasses you can buy in the UK. I taught kids with dyslexia and some of my students had them. Just google tinted glasses dyslexia and you might find some links. Hugs mariax

Thanks Maria, let me know how it goes with the rest of the tests. Xx

Hi Maria

When I had my first symptoms, I too went private (GP was flummoxed, said I needed a Neuro, only way to get one fast was to go private). A whole lot of blood tests? Yes, had those. Crash course of B12 injections? Yes, and those as well. Tested for Lyme Disease? Yes, and that.

But the Lyme test was just because, some months earlier, I had been in a part of the US where one can catch it. But now comes the tricky bit - you get Lyme Disease from a tick bite. Tick bites leave a very severe penetration site. I had no signs of a tick bite anywhere on my ankles (and that is where you get bitten). The test was done “just in case”, and came back negative, of course.

So, unless you have an insect bite on an ankle that really does not want to heal up, yours will probably come back negative too - leaving you with the MS diagnosis. One of the things you get when you go private is usually “thorough”, and it sounds like you have just had “thorough”.

What you might want to think about, is getting your Neuro to write a “request” to your GP for something - that will get you back into the NHS system, fast. And, if your Neuro is also an NHS consultant, you might want to think about a referral to her (in her NHS hospital) if the need for an MRI or LP comes up as a way of confirming the MS diagnosis.

Geoff