5 years, 11months and 4 days to DIAGNOSIS

Everyday living
1

Well guys today I was told by my private doctor i have MS. WOO HOO, balloons, and bunting, and lots of champagne lol.

I got fed up of waiting on the NHS, and also I wanted to see if I had LYMES disease so I paid to see a doctor privately and have had a whole range of blood tests done and loads of results back mostly with stuff on them. It has cost me a lot of money but I feel vindicated.

My doctor has based the diagnosis of MS on the first MRIs I had and the latest MRI I had 2 years ago as I had them still as I paid for them myself so I gave them to her and my VEP tests as well and the deficiency showing up in my bloods which are classic for anyone with MS and my neurological exam testing she did which I failed miserably.

Alongside this she also said i have had Lymes and a co infection of Lymes called Ehrlichia, which they beleive is still active but would not be causing all the neuro problems.

I had a new Lymes test which tests for antibodies and she thinks the new lymes test antibodies are reacting to the several viruses i have, EBV, CMV and shingles. She said that we need to address these viruses even though the test show they are not necessarily active the titers are still very high and could be causing my MS to flare really badly and also muddy the waters for the Lymes testing. For example my EBV antibodies are 98 they should be less than 5 lol.

She is prepared to write to my GP and tell her what she thinks about it all and ask her to put me on anti virals to see if this will help to stableise my MS which is a bit out of control right now.

She wants me to go into their hospital to have detox etc to see if it would help my MS, because of the toxic chemicals they found on my blood tests which shocked me a bit, but she knows fiances are a restraint. They are sending me a cost estimate she always desperately wants me on nutrients as I am low in some bad things for MS including B12.

She said I have a lot going on really and until i get some of the other things under control my MS is going to be a problem for me.

What do you think guys. So not only MS, but Lymes, Co infection, EBV, CMV, Shingles, Aspergillus fumigatus, Toxic Chemicals, low B12, anemic, magnesium and manganese deficient oh and a few more lol. Not too greedy hey lol.

Happy days.
Maria
Whatever you have always wanted to do…begin today.

2

Hi Maria,

Golly gosh… you sure do have a lot going on with you. Poor you :frowning:

Just a couple of questions if that’s OK…

You don’t mention which sort of doctor you saw privately? Is she a neurologist? Because only a neurologist is qualified to make the diagnosis of MS and a few things you have written that she said sounded a bit odd to me.

One thing in particular stood out and that was the diagnosis of Aspergillus fumigatus. That is actually quite an odd diagnosis as it usually only occurs in people who are immune deficient such as organ transplant patients, chemo patients, people with AIDs etc. All of us breathe in squillions of spores of Aspergillus every day; it is the most common mould there is, but in a person with a normal (or in MSers case, increased) immune system it wouldn’t make us sick…

Also you say the Lymes is reacting to the shingles virus according to your Dr. Trust me, if you had shingles at present, you would know about it. It is an incredibly painful illness. If she found evidence of ‘shingles’ on a blood test all she found was evidence of the Herpes Zoster virus in your system which just shows you had chicken pox at some stage in your life. Herpes Zoster lies dormant in your body and will always be present if tested for. It is the same virus that can cause shingles at a later date but its presence does NOT mean you actually have shingles or that you are ill in any way, just that you have been exposed to the virus in the past.

You also mention a “deficiency showing up in my bloods which are classic for anyone with MS”. That has me curious as well because as far as I know there is nothing yet that shows in the blood work that is “classic” for MS.

I am also a bit concerned by the mention of the “toxic chemicals” and her wanting you to go into “their” hospital for a “detox”. It just doesn’t quite sound like anything a neurologist would do as a first line of treatment when diagnosing MS and setting up initial treatment strategies.

Please don’t get me wrong. I do understand the incredible frustration of being in limbo for so long and the relief when finally a Dr is willing to make the diagnosis but this just doesn’t feel quite right and I would hate for you to end up going down the wrong treatment path when with a bit more patience the correct diagnosis and treatment may be only just around the corner.

I was in Limbo for 6 years and it was a terrible time so you do have my sympathy…. And if your Dr is a qualified neurologist I apologise for speaking out of turn but if she isn’t please do consider what I have said before spending more money.

All the very best,

Belinda

3

Chuffin ell Maria! Thats far too much for one body to cope with. ill have to look up Lymes. I can hardly get me head round what you`ve got. Poor you. i do hope you can cope with all the stuff to come too.

So getting a dx of MS after all this time, is still a possiblity for me too, mebee!

Do look after yourself my friend.

much love Pollyxxx

4

Me again. Infected ticks cause lymes. were you ever bitten by one? I was when I was about 5…mmm, must tell someone eh?

luv Pollx

5

Blimey, poor love all those things going on in your body. Dont wonder your ms is playing up. Seems your doctor maybe right, you need control of all these things even if ms cannot be controlled but it can be helped by being as strong as possible without other infections doing their thing.

My heart goes out to you, hopefully very soon youll be on the right medications to help your body fight what can be fought. Maybe your ms symptoms may not be as severe then, here’s hoping.

I wish you well, now and in the future,

take care,

bren

x

6

It lovely to hear that someone finally listened to you, but I have to say that what Belinda’s written makes an awful lot of sense. Is this doctor a neurologist? Will this diagnosis “count” as far as the NHS is concerned? I think I’d want to check those things out before doing anything more with her.

Karen x

7

Hi i have just answered Belinda.

The NHS why? They have done NOTHING for me lol. They can do nothing for me either. IF there is anything else out there that I can have on the NHS without an MS diagnosis perhaps someone can tell me? I already get DLA, blue badge, and I have been offered I.V. steriods and get a script for preglabin or whatever I need to cope with my neurological pains and symptoms. IF the neuro from the NHS finally gave me a diagnosis I would not get anything different lol.

I had a simple test for Lymes on the NHS which came back negative, which it would if I have had Lymes for more then 10 years which I have, but then they have to spend money and do the more intensive tests which cost money and they wont do that. On the wesern blots I had it showed active and inactive Lymes in more than one band one would expect to see in Lymes.

The NHS has caused me 6 years of hell and back and nearly put me in a box lol.

8

Thank you Bren you have got it sussed hun. That is excatly the treatment plan I need right now.

9

The one thing the NHS can give you no one else can which is essential if you have MS are DMDs, Maria. They are the only thing we have at this stage that are proven to slow down the course of the disease and to reduce the frequency of relapses.

I do hope everything goes well for you…

Belinda

10

Hi Maria

Well arn’t you the lucky one although having read your post I would be a little wary of the diagnosis. Unless the doctor is a trained neuro they don’t know what they are talking about (I have personal experience of this), even the specialists can’t answer all the questions and I am under the top Professor in the country. Also MS does not show in a blood test so I think this may be misleading. Just be careful not to keep handing over money to this private hospital when you are entitled to all this on the NHS. Good luck.

11

Hi

Oh dear, I too asked about Lyme disease but never really got an answer. I do have a diagnosis of MS (confirmed by two Neurologists) but as far as my bloods are concered absolutely everything is ok, even inflammation markers, which I thought would have been raised in the case of MS. I keep getting sent away as though I am imaging my symptoms, even by MS nurses.

I do sympathise with you, its so very frustrating. I do take multi vitamins and wonder if this does help.

Take care

Helen

x

12

Hi

Being twelve years and counting in limbo does strange things to me :wink: If I am being honest I am always very happy when someone escapes limbo and also a wee bit jealous.

Congratulations on your diagnosis and commiserations.

I think everyone has made some valid points out of concern for your best welfare which you can consider to make an informed decision so that you can best address your MS. You have been in limbo a long time and to have someone diagose must be a tremendous feeling of relief.

Over the years I saw my share of NHS neurologists privately but I did not have good experiences. Then a neurologist a few years ago prevented me from seeing them privately and moved me to the NHS - no argument and no questions - that was how I was going to be treated from that time forward. This happened with the neuro who told me that I have multiple brain lesions suggestive of demyelination and central nervous system inflammatory disease. But they didn’t actually diagnose MS.

Even though I didn’t receive an official diagnosis I was moved to the NHS. And,as an aside, my treatment strictly on the NHS has been much better than when I went private!

TO make a very long story short I think your consultant should be moving you to the NHS for treatment because of and for your MS but for other things unrelated to MS you can stay private, if you choose. Anyone can jump in here, am I right? Don’t the consultants move an MSer to NHS off of private health insurance when a diagnosis of MS or any other progessive, long term,incurable condition is given? Or, am I remembering wrong-AGAIN lol

Best to you and do keep us updated.

Tu

13

Hi Maria ,

I remember you from the old forum and know you have been through hell. Lymes is one of the diseases that mimics ms in both presentation and I think mri. It is treated with antibiotics for quite a long period. It is possible you have both but I think it would be rare. What is ringing alarm bells for me is the bringing you in for detox. Please please check before handing over money for this. The only thing patients are brought into hospital for detox is for reducing morphine, drugs and alcohol detox. If you have Lymes disease you need to start antibiotic treatment. I wish you all the best of luck Maria. x

14

Hi Maria ,

I remember you from the old forum and know you have been through hell. Lymes is one of the diseases that mimics ms in both presentation and I think mri. It is treated with antibiotics for quite a long period. It is possible you have both but I think it would be rare. What is ringing alarm bells for me is the bringing you in for detox. Please please check before handing over money for this. The only thing patients are brought into hospital for detox is for reducing morphine, drugs and alcohol detox. If you have Lymes disease you need to start antibiotic treatment. I wish you all the best of luck Maria. x

15

I sent you a long reply from your first post and it has been taken off have no idea why.

I reiterate there are no DMDS for me belinda, I was told that by my neuro anyway, he said if it was MS it would be PPMS not RRMS and he told me about 4 years ago that it would be too late to offer me anything apart from I.V. steroids which thank god I refused as having them would have had a devisating effect on my Lymes.

There is NO 100% diagnosis of MS by ANYONE. Even the neurolgoists get it wrong and diagnose people with MS when they have other diseases, I have met a few over the last few years, some with devisating results being given drugs for MS when it was something else and I have met people who have been given the run around by their neurologist being told they have MS for years then having the rug pulled from under their feet and left in limbo land again for years with no support.

I am in a great place right now. I dont need confirmation by the NHS doctors, who have been failing so many people anyway with neurolgoical diseases.

My doctor is an expert and is able to tell me what is wrong. I did not go into this lightly and would never waste my precious money to do so.

I cant understand why its so difficult for people to just accept that after 6 years of being told I PROBABLY HAD MS by my neuro now being told by someone like i said with years and years of experience in this field telling me I do have MS, and I also have Lymes and a co infection of it.

Its a shame my post seems to have been removed as I thought it explained it all very well lol to you Belinda and actually thanked you for caring about me enough to watch my back.

Its onwards and upwards for me now I am I ready to fight all these mad cap things going on inside lol.

16

I think that people aren’t so much finding it difficult that you’ve been diagnosed with MS as suspicious that this doctor may simply be telling you what you want to hear so that she can persuade you to spend more money in her clinic doing treatments which don’t actually do anything for MS.

If your GP agrees with her and implements her suggestions then we are obviously being too cautious - but we are just trying to look out for you.

I really hope it all works out brilliantly and our fears are groundless.

Karen x

17

Hi Anita, ok perhaps i have not explained myself well.

The detox is not for Lymes, MS or viruses, or drugs or alchohol. On my Toxic Chemical blood screen from a very reputable laboratory they found a high trace of several things which should not be there. 3 of them actually which could cause worsening of neurological symptoms, so this is why I have been asked if i would like to go in and try to remove these chemicals. I am not making any decision about this, and will be discussing it with my own GP next week. My private doctor has kept my GP in the loop at all times, and they talk to each other.

As to Lymes and antibiotics. I know a lot about Lymes and have discussed at great length the treatments for it. HOWEVER, at the moment I have antibiodies very high for Epstein Bar Virus and also Cytomegalovirus, the antibodies are very high suggestive of previous infection but the score should not be as high as they are.

So these high antibodies showing IgG could be reacting with the results of my lymes test because to be honest its harder to get a diagnosis of Lymes then it is MS in the real world because the lymes spirochete are very tricky and can hide in cysts.

SO to try and eliminate some of the problems my doctor thinks i should go on anti viral and is writing to my NHS doctor to see if she will agree for me to go on AV to address the high antibodies left from EBV and CMV viral infection. whether this works or not is another thing lol.

Once this is done, I can then have antibiotics for my co infection of Lymes. I understand what she means. Going on antibiotics is never ever taken likely with Lymes it can make the person with Lymes extremely ill (its called HERXING). I have enough on my plate right now. They Lymes has been with me for at least 10 years so a few more months will not make any difference to me.

I am with an expert Lyme Literate MD who knows her stuff, and she is advising me in a professional manner. She has helped many people in this country who have been fobbed off by the NHS who have told people they dont have Lymes and have MS and have been getting sicker and sicker, and now I have met a few who have moved from a wheelchair to walking after a few years treatment.

Thank you for caring about me and watching my back, but really I am not going into this lightly I have done the research, and I am not handing over any more money lol, in actual fact my doctor is bending over backwards to get some of my treatment through the NHS. Maria

18

I am not sure why it would be rare? They are two absolutely seperate diseases. One is from a tick bite which I had 10 years ago and was ignored.

The other well no one knows why we get MS, but it presented itself in 2004 classic with ON, and then a downward spiral of symptoms, lesions on my MRI and many other MS type things.

I have a co infection of Lymes diagnosed, called Erlichisia, and it does not present with lesions, or neuro problems. Yes there is a possibility i had Lymes too but it is not showing active at the moment but the co infection is.

i know lots of people who have MS, Lupus, so many things together lol.

19

Just jumping in for a sec. I feel I have to clarify my post. When I said the neurologist prevented me from seeing them privately I meant figuratively. I still saw the same neuro but through the NHS.

That is because private insurance doesn’t cover chronic conditions, its designed for short term acute conditions with treatment designed to get you back to stable health, it also will cover a temporary worsening of chronic conditions but not ongoing care.

That is why I was switched to the NHS but saw the same neuro, because despite no name I have a rather miserable chronic condition.

Sorry was not very clear

So your consultant will undoubtedly just move you to the NHS figuratively for your MS. That leaves your private insurance for other things (well, hopefully not as MS is enough to deal with!)

Tu

20

No idea why your original reply to me didn’t come through Maria. I am still concerned though that you are chasing a bit of a furphy with some of these blood tests and results though. I must admit I would feel more confident if I knew what qualifications your new Dr had but really it is none of my business beyond the fact that your posted it here and I just wanted you to look at the possibility that you might be throwing away your money.

I am still a bit confused about the results you are talking about as they are all showing antibodies for common diseases that most of us have had, ie EBV, herpes zoster, HHV5 etc. If your GP is happy to treat you with anti-virals for carrying anti-bodies good-o but I would be surprised. Most GPs will only prescribe anti-virals for an acute attack because they only work in the first 48 hours of the virus becoming active… bu I will obviously leave it up to your GP.

I am also confused by your comment [quote=“MTurner”] I reiterate there are no DMDS for me belinda, I was told that by my neuro anyway, he said if it was MS it would be PPMS not RRMS and he told me about 4 years ago that it would be too late to offer me anything apart from I.V. steroids which thank god I refused as having them would have had a devisating effect on my Lymes. [/quote]

By this it appears your NHS Neuro has diagnosed you with MS? And I don’t quite undeetsand why you would be offered IV steroids if you aren’t relpasing… Never mind… complicated business this neuro stuff.

All the best and I hope all your issues get sorted and you feel better for it,

Belinda