A Diary of MS, from pre-diagnosis on....

I have recorded my experiences with initial symptoms of multiple sclerosis (MS), and how they (and I) have been dealt with by the NHS. I hope this is of use to those of you as yet undiagnosed, to illustrate what happens and how it happens, and how you get a diagnosis.

Name:
Location: Stockport, United Kingdom

Background in environmental science, keen on making things work, from altering jeans to FIT, to cooking alternative cakes, replacing bad flooring, making a robot..

Tuesday, November 22, 2005

Lumbar Puncture with Hope, September 2005

A lumbar puncture is an invasive procedure, so I was advised not to drive (I don't) and that I could get there and back using patient transport. I was told to ring my GP surgery and book a ride, stating that I can get in/out of a car, for myself and companion for the appointment time, and that I would be finished by 3pm.
Oh how wrong!
Patient transport is a not-quite gelled system of volunteer drivers who can end up going anywhere! Whether you get a car when requested depends on where else the driver has to go before he gets to you. The car was booked for 7:30 am. At 7:30, I checked it had been booked. At 8:15, I rang the patient transport people, and was told the hospital would wait. The car came ~9, and we got to the ward after 10am. I was shown to a bed, where we sat and waited, and waited, and waited, and ate some of the lunch we'd brought with us, and waited and waited. At 2:45, the neurologist showed up. I asked what was happening, and I got the return journey cancelled.
It was AFTER 3pm when a chap showed up to do the lumbar puncture, again at my bed. The after-care instructions I received were completely different; no 6 hours bed bound, but drinking lots of fluids for the next few days. He got me into position, and yes it hurt, but mostly when he injected the local anaesthetic. It also became increasingly uncomfortable, from very to nearly unbearable, as the fluid was drained. I squeezed my partner's hand tightly throughout, and breathed hard. I can't say it was really painful, at least not like having your nerves moved by a needle as happened before. I hated the dragging feeling as the draining needle was removed.
The chap asked if I wanted to see the fluid, and I was amazed it was a pure, clear liquid, perhaps thicker than water.
I was asked half an hour later if I was ready to return home, and a nurse booked patient transport for me. Eventually, we ate the rest of the food we had with us.
To cut a long waiting story short, we gave up waiting at 9:30 pm, and walked to the (not-so) nearby tram stop, got the next tram into Manchester and then the bus home. My back was very stiff when we got home at ~11pm. I had near-cponstant headaches for the next 2 or 3 days, despite painkillers (aspirin, ibuprofen, paracetamol, codeine...)
I had been told to expect a wait of "several" weeks for the results. This time they weren't wrong. Apparently the testing itself takes about 24 hours!

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