Hi @greengiant, what a journey to this point but as you say nearer to finding out what is going on. 2 years to this point is frustrating particularly as you say you were in hospital. Try to put that to one side now, and focus on the next steps. Hopefully, the lumbar puncture won’t be too long. As always keep in touch and let us know how you get on.
And that’s me pretty much discharged by the physio. Just a handful of appointments, and that’s my allocation used up… 
I may get a review appointment by email, once the neurologist has the results of the next sort of tests.
But pretty much physio has told me to “try and walk normally”
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Sorry, but this did make me laugh out loud. I’ve been given similar advice in the past. Super-helpful, no? 
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Walk normally 
… I have just been referred to physiotherapy, because I can’t walk normally 
… watch this space 
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Missed phone call from neurologist yesterday, saying he had a form to go through with me.
I phoned him back today. No, it wasn’t a form for the lumbar puncture & genetic blood testing (as I had hoped) but instead it was a form from the DVLA which he wanted to go through with me.
So he’s now done that, so hopefully I’ll hear back from the DVLA with regards to getting a “medical” licence. I don’t feel that I am unsafe to drive, but neurologist did say that I had to contact the DVLA due to long term neurological issues.
With regards to lumbar puncture, it might be a couple of months yet, and the blood tests for the genetic testing can’t be done at the same time, I had hoped I’d have had them done before my next appointment with neurologist (12th Julyt), but that is unlikely.
But at least I know I’m just waiting on an appointment for them now, rather than waiting for the neurologist to decide to do them.
I guess another few months wait won’t do any harm, it is after all 2 years at the end of July…
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Goodness what a rollercoaster…. Waiting on phone calls, appointments and or letters can be so stressful. I’m on a number of waiting lists and becoming obsessed with checking the doormat for post.
Reading personal stories like yours and others reminds me of what connects us all, that a journey to diagnosis whatever it turns out to be to can be a long one.
Keep sharing, you are keeping so many company as you do.
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While my walking still isn’t great (compared to how fit I used to be as a postman on delivery), I am trying to make myself get out and about more.
While I do miss my old hobbies of mountain biking and long distance cycling, I am finding that my new hobby (since last year) of radio controlled off road trucks quite good fun.
A couple of miles walked today, exploring a local woodland with my new RC Truck (Traxxas TRX4 Sport which I built as a kit).
Jolly good fun, which all helps with my mental health
It’s certainly not healthy to keep focussed on my Neurological issues, which is one of the reasons I took up RC trucks as a hobby last summer. Plus it helps to give me something to plan ahead for and look forward too, eg attending events with my local RC truck group.
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That’s a monster truck! Glad to see you are diverting yourself with enjoyable pursuits, and getting out and about with others.
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Thanks Ziola. It’s certainly a fun (if somewhat expensive!) hobby!
Anyway, I’ve now arranged for an eye test at local opticians next week (I was over due for an exam anyway).
Since a previous neurological examination flagged up “pale optic discs”, that’s something i’m going to mention during the eye exam. The neurologist is unconcerned about it, but I’d rather get the opticians to have a look anyway (they are the eye specialists anyway).
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A letter from the hospital today.
Appointment has now been booked for my Lumbar puncture, 28th of June at 11am.
Trying not to get too ahead of myself, as there is a real chance that the results may come back inconclusive.
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Not long to wait. Another piece in the jigsaw. Hope it goes well.
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As frustrating as it is to wait for appointments or in your case a lumbar puncture… the anxiety it brings is palpable.
We all want to know what lies ahead, one way or the other and that can be scary. Either way not long now, stay calm and focused. Thinking of you 
…
Eye test went ok. No real changes to prescription. Possibly slightly worse colour vision in left eye (red green) compared to right.
No issues with glaucoma tests either (both my dad and grandad had glaucoma, although neither lived long enough for glaucoma to cause any real issue with eyesight).
No changes in the back of eye images taken today, compared to those the last time I had an eye test in 2018.
So no definite clear cut signs of anything like optical neuritis. While the optic discs do look pale, they look healthy according to optician.
Next eye test will be in 2 years time.
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Letter from the DVLA today.
They have now completed their checks, and I am now getting issues with a “medical license”, which is valid for 3 years, then needs renewed. Hopefully I’ll have a diagnosis by then!
Anyway, old licence returned to the DVLA. Hopefully not another 7 months for me to get issued with my medical license.
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The lumber puncture went ok today. I had to wait around 50 minutes due to the doctor running late.
No issues during the lumbar puncture. Apart from a “sharp scratch” when he injected the local anaesthetic, and some discomfort while he inserted the spinal tap needle, overall a pain free experience.
Bloods were also taken for general blood work.
Discharged straight away, with advise to take paracetamol if i get any back pain / headache. Although if i do get a severe headache which doesn’t improve, then i need to contact hospital.
I have booked the next couple of days off work to rest and recuperate.
My consultant should have the results of the lumber puncture when i see him on the 12th of July.
But at least I’m now hopefully nearer a diagnosis.
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Good to hear your lumbar puncture went well, and the blood tests, and not too long a wait to get your results.
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Thanks Ziola.
Apparently I’ve still bloods to be done for HSP and GAD antibodies? But I suspect that the neurologist may arrange for those after he has seen the results of the lumber puncture.
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Sounds like you are still ticking the boxes but at least going in the right direction.
Glad that the lumbar was if a little uncomfortable bearable.
Thank you Rogue.
Today, lower back a little stiff, but otherwise no real after effects of the lumbar puncture. I am aiming to go back to work on Friday though (I booked wednesday & thursday off as annual leave).
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8 days later, no real after effects from the lumbar puncture. Maybe slight bruising, and feeling a little tender in the back (particularly when bending forward), but overall, a painless recovery.
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