Final diagnosis after a decade with PPMS

[Crazy_Chick]

Morning Moyna, to be honest i could never understand why i didnt get a diagnosis, but I am convinced it was my birthdate 1951.

My first brain scan i paid for myself, showed a large area of high signal foci, in the deep white matter of my brain. This was put down as could be demylinating but the radiologist suggested it was my age…I now know aged high signal foci dont exist only silent foci.

Then i had my VEP i think 2007/2008, which showed optical neuritis bilaterally. Still nothing.

I had a LP, but it not only showed o bands for MS, it showed match inflammation in the blood, which makes it negative for an MS diagnosis, but hey they never tried to find out why i had the O bands or the inflammation in the blood.

I saw a private doctor at Breakspeare Clinic it cost me a lot of money, she looked at my MRI films, and some of the more recent ones, did a full neuro test which nearly killed me, and took 25 vials of blood, a lot went off to the states. She finally diagnosed me with a differential diagnosis of MS and co infection of LYMES disease which came back positive for Erichilosis.

My NHS doctor would not accept these findings.

Anyway then more MRI which showed over a few years 3 different lesions in different places on my lower neck and top spine.

Then before xmas i had another VEP test and waiting and waiting for a result, which came in a form of letter saying they found the VEP showed positive again for ON, and i was to see him, so i paid privately and saw him and he finally told me he was treating me as an MS patient, PPMS, and a letter went to my GP, and it took 10 years and i am still thinking about having a party.

Even my NHS nurse who i spoke to the other day about my UTI, praised how I behaved myself throughout the ordeal. She said they were always looking at MS, but had to have that last thing to clinch it. If you look at McDonald criteria, they can give a diagnosis, if there are VEPs positive and 2/3 lesions present, so wallah i got it lol. I call it the VEP SANDWHICH LOL.

Phew i can waffle too i find it helps the pain i am in to just type.

I am totally convinced if i was a young women with all the positive stuff i had over a few years i would have been diagnosed, the writing was on the wall when the first radiologist said born in 1951…aged spots…end of.

So i agree with you the older we are the harder it is to be diagnosed. xxxxxxxx But my mantra is NEVER GIVE UP. If its MS it will finally show itself and for me it did, thank god…x

P.S. I believe the inflammation in my blood at the time was the Epstein Barr Virus which was high and also the lymes co infection, which i believe is still ongoing but keeping quiet for the moment lol.

[Chrissie52]

Hiya Rosie, well after your fab descriptions and explanations of all the tests, scans, an arms worth of blood and a fortune in private consultations, all we have to do is go to McDonalds and have a sandwich! Seriously hon, you have the patience of Jobe and determination to get somewhere, somehow. I admire the knowledge you have of the various tests, what they imply etc.

As I said earlier, I am delighted for you to finally have the right diagnosis. I forgot to mention I gained a lot of weight with Gabapentin and then even more with Pregabalin. My pain meds were changed when I smashed my ankle in Jan 2015 and I still take Oxy Norm liquid each day. The best news is I have since lost over 3 stone so I’m not a fan of Gabapentin. But, for some, it works a treat without problems.

If you are anything like a lot of us you will have forgotten who posted what but there’s no charge for repeats. Anyway, after 2 or 3 years a member here, I’ve only just discovered a whole lot of info available. Where the menu of: “What is MS” " Support" and other options, takes you to lots of different areas to cover most, if not all, the topics we need to help us associated with the trials and tribulations (sounds lightweight eh) of MS.

There are many leaflets found in Neuro Clinics called MS Essentials, there’s quite a range or printable from this site.

It’s just possible that if you show one or two of the MS Essential leaflets, they might just get a feel of what you have to contend with and that it is beyond your control entirely. I’ll put something on the forum about the leaflets.

Good luck hon, Chrissie x

[Bracknagh]

Could write a book on my path to MS diagnosis. My first symptoms was persistent lower back pain and trailing of my left foot. I had a previous history of chronic back pain but on this occasion I obtained a diagnosis of MS but still do not have any specific advice as to whether or not I need a lumbar puncture. Over this last 6 months my neuro is still carrying out MRIs to find out what causes my back pain and stiffness which at times is excruciating.

My GP has been of limited help. I understand they (GPs) are over loaded with work but wish they could be more helpful with treatments rather than just affirming you have MS.

At outset I was proscribed Gabapentin, then Dulloxetine and numerous scripts for co-codamol. All these medications were of little help but recently I was proscribed Baclofen which I have found to be best of all. Medics seem to be quite often just using trial and error to see what works best for each patient.

After Easter vacations I am going to visit my local NHS MS Nurse as I have been told they can be much more helpful than GPs. I suggest those in ongoing doubt should try and get a similar appointment as they could help with ongoing treatments and in particular pain management.

Wish I could end on a more positive note but MS patients quite often have to really push to get answers and help with their conditions.

[Min]

Hi Bracknagh, you might benefit from a referral to the pain clinic. They’re really good and as that’s their specialty they offer all sorts of treatments and should be able to find the cause of your pain. Possibly something to speak to your GP or nurse about?

Good luck, nerve pain is awful to live with, I hope you get some help.

Cath x