My latest neuro consultation

So off I go to the annual date with the neuro, 50 mile round trip in wind and rain, wait for an hour, see him for less than 15 mins, and am told to come back in a year. All the PPMS symptoms and signs are there, and deterioration, but no clinical evidence from any tests. He says use PPMS as a ‘working title’ but no definite diagnosis possible, despite being unable to walk without a Rollator, sever foot drop, etc etc. Frustrating or what? He told me I was very strong minded and a fighter - this on the basis of three brief consultations in as many years…felt like hitting him with a rolled up newspaper! Just sounding off to you all, really. So his expert advice is keep on battling on. Thanks a lot!

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Hi Lynda, must be so frustrating for you. I was in limbo (with an ME diagnosis…so at least I had something to explain it) for only 2 years. I can’t imagine how terrible it must be for it to go on and on as it is for you.

I can only hope that they manage to diagnose eventually. I’m assuming you’ve had an LP. That’s how I got dx.

Take care and thinking of you,

Pat xx

Yup, in 2014 had MRI, lumbar puncture, electromyogram, nerve, conduction, evoked potentials, tests for vitamin deficiencies…all negative, and neuro says no point in repeating them. So on we go…! Anyway, much cheered today by news of second son’s first baby on the way, which is much more important!

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Hi Lynda, congrats on lovely grandchild on the way!

I have read post of people who waited a year or two and had another LP with a positive result. Waiting is hell I know…but do not give up of ever getting diagnosed.

Pat xx

Hi Lynda and congratulations on your good news. At least you have something positive to look forward to.

I’m really upset for you about how you’re being treated. In a way I can sympathise with you. It took me two years and a lot of bouncing from one specialist to another (and a good few of those had NO inter-personal skills at all) before I got my diagnosis. Can you not request to be transferred elsewhere for a second opinion on your diagnosis? As Pat has mentioned, there may be something that now shows whether you have ms or not.

It sounds silly, but once you have a diagnosis you may be eligible for more help. When I was dx with a spinal cord injury I got no help at all. As soon as I was diagnosed with ms I was referred to an OT who arrived at my house and an assessment was done, changes were suggested and equipment delivered. Suddenly the bladder issues I’d been struggling with for at least a year were taken seriously, I was referred for tests and immediately taught to self catheterise and referred to a continence nurse.

I could go on but will spare you that. What I’m trying to say is that your symptoms are taken more seriously. You may also be lucky enough to end up like I did. Once I got my dx I asked to be referred to a Neuro nearer to home (I live in a very rural area of the lake district) and I’ve never looked back. I saw my Neuro and nurse today and they always leave me very reassured. I know my appointment will always be late so I take a book. But once my turn arrives all my questions are answered, they never rush me, and they really listen and take in whatever’s worrying me.

My nurse pops into my home to see how I am when she’s in the area, and is always available by phone or e mail. I’m very lucky I know, and this Neuro is much closer to home than the previous one. It might be worth your time just to speak to your gp and tell them just how unhappy you are with how you’re being treated. This illness isn’t going to go away or get better, you need a specialist you can talk to and trust.

Take care

Cath x

Hello Lynda, Your story seems very similar to mine…Iv’e got all of the signs physically but no clinical signs as yet so no diagnosis. Its so hard because without a label there isn’t much help, ive been a wheelchair user for nearly 3 years. but left with a fnd diagnosis …“Its your brain converting stresses into your body” or " if you want to get better you can" …Rubbish, i’m not saying that these disorders don’t exist but I am a very positive person, yes i get depressed at times but I know that there is more going on…I don’t know if I’ll ever get a proper diagnosis , Iv’e put it down for now, if it happens it happens, it takes far to much emotional energy to chase this one, the best iv’e got is a 2nd opinion from a neurologist who listened and believed me and said he would review all my scans and reports, that was a few months ago, but at least i’m on somebodys list.

Congratulations on your good news…I have just become a Grandma to Identical twin Girls, they are gorgeous! and have given me a new lease of life.

Michelle x

Thanks, everyone, for such great support. I think I will wait until my GP has the consultant’s letter, then go and see her. The trouble is, in rural area you don’t have a lot of choices. My next hospital would be Addenbrooke’s at Cambridge, a two hour drive away, which would be ok if you knew it was going to be worthwhile, otherwise it would be a major expedition. Kings Lynn isn’t a teaching hospital though it’s nearer, so I don’t think there be much point going there. My present consultant is very highly qualified and experienced, according the internet - maybe he’s just lacking empathy and people skills!

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