MS Diagnosis

[KK77]

Thanks for sharing, Hanshan. Hope further tests yield more light on diagnosis and treatment.

Keep us updated on progress.

[MRS STRESS ED]

sending you prayers too xx

[pulisa]

How are you doing, hanshan? I hope things are relatively stable for you.

[hanshan]

Hi KK77, MrsStress Ed and Pulisa – Thanks for your words of support. I’m gradually adjusting to changes in my lifestyle, according to what I can do easily, or with difficulty, or not at all, but I'm generally stable. My treatment at the MS clinic is progressing, mostly tests so far. Yesterday, I went to the hospital for an eye test and to give a blood sample.

I didn’t know quite what the eye test would be – just an appointment with the “orthoptist”. It turned out to be two tests. First was a visual field test – about five minutes for each eye staring at a blue dot and pressing a clicker each time I saw a flash somewhere around the dot. The second was OCT (optical coherence tomography – I asked the orthoptist to write it down). Again, staring at a blue dot while a red line moves around. This forms a picture of the layer of cells in the retina at the back of the eye. Optic neuritis (of the optic nerve) is a common occurrence in MS, and I believe it also has effects on the retina. I don’t recall ever having any episode of painful vision disturbance, but I do have a vision difference between my right and left eyes. In dim light, the vision in the right eye seems slightly brighter than the left, but if I go outside into bright light, the right eye seems particularly glary.

The blood sample is to test for the presence of JC virus (named after the initials of a person found to be infected with the virus when it was first studied). This is a usually harmless virus which infects around 70% - 90% of people everywhere. However, if the immune system is suppressed, JC virus can cause a fatal illness - progressive multifocal leukoencephalopathy (PML). Several of the medications used to treat MS suppress the immune system, and have been linked to cases of PML, literally three or four cases for each medication, but still a risk that must be considered.

Pulisa – the next test is the lumbar puncture in two weeks time! I read that only around 25% of people develop a headache, and even then it can be largely prevented by lying down flat for several hours. I haven’t had a lumbar puncture before, so I don’t know if they will keep me lying down in the hospital or not.

So, anyway, the hospital is being very thorough. Also, the MS clinic is connected to an MS research unit at the university, and researchers love to collect data – I’m happy to be part of that. It really is a field where valuable discoveries with leads for treatment are being reported every week, although concrete results will still be some time away.

[Magic]

Just wanted to wish you all the very best hanshan. It sounds to me that you are having the best care, examinations and treatmentsxx

[pulisa]

I recommend lying down for a few hours after the lumbar puncture, Hanshan-it definitely worked for me.

I'm glad you are satisfied with the treatment and tests you are having. They do sound very thorough and you obviously need an accurate and watertight diagnosis which doesn't leave room for doubt.

[hanshan]

Hi Magic - Thanks for your well wishes - it does mean a lot. Hi Pulisa - I'll try to lie down after the lumbar puncture - at the moment it's a procedure I don't know a lot about. I suspect all the tests are part of this being a research facility, as I already have a diagnosis from a leading expert in Australia. Nevertheless, I'm quite happy to have every part of me tested, if it helps to bring about better treatment or a cure, maybe not for me, but for people to come.

[hanshan]

Just updating to say that I’ve been to see my GP (primary care physician, I think, in the US) as I needed to update my prescriptions and to see if there had been any correspondence from the hospital. There was, indeed, a letter from the hospital outlining my visit, the tests they have ordered, and the possibility of starting Ocrevus. Ocrevus is paid for by the government Pharmaceutical Benefits Scheme, but I think another reason for all the tests is that a case has to be made with documentation for its prescription.

For my part, I’ve been reading up on a line of research that looks at repurposing less expensive medications that have been approved for various conditions but which also may have neuroprotective or neuroregenerative properties (particularly helping to regenerate myelin, which is reduced in MS). Two candidates seemed to apply to me – one was metoprolol (a beta blocker) instead of my current blood pressure medication, and another was solifenacin (an anti-muscarinic), which helps quieten urinary urgency, which is a symptom of MS that I have. My GP has become used to me coming in armed with printouts, and has agreed to give the meds a try-out, along with my usual mirtazapine and pregabalin. I’m a bit worried that I’m going to be full of meds, but I’m willing to try anything at the moment.

As far as tests go, I have a lumbar puncture next Wednesday, and a follow-up MRI in two weeks, plus I have to make an appointment for visual evoked potentials – so many tests!

The last thing is that I had my doctor complete my application for a disabled parking permit. I can still drive okay, but from now on I will have to have a periodic medical review – it’s a legal obligation once I received the diagnosis of MS.

[pulisa]

I'm sure you are very much on the ball re potential medication and it's good that your GP has respect for your choices. Anything to improve the symptoms and therefore your quality of life has got to be worth trying.

I was worried when I had my lumbar puncture but didn't find it as bad as I was anticipating. I would recommend the lying down afterwards though for a few hours if your hospital still advises this?

There must be a lot to have to contend with, Hanshan- I have nothing but admiration for you as regards how you are dealing with what must be a challenging diagnosis. I hope your new meds will be compatible with your mirtazapine and pregabalin but I'm sure you will already have researched this extensively. The best of luck for Wednesday.

[Lola-Lee]

Hi hanshan

Is your Lumbar Puncture tomorrow or next week,just want too wish you well,I have had several along with a bone marrow aspiration,I will be thinking of you x.