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hanshan
26-05-18, 09:27
Ive just had a diagnosis of multiple sclerosis after various symptoms lower body weakness and loss of balance when walking, bowel and bladder disturbances, visual disturbance in one eye, heat-related weakness including from hot showers and baths, episodes of numbness and tingling, an odd electric-shock sensation down one side of the body when bending the head forward and confirmed by multiple lesions in the brain and spinal cord as shown by MRI scans.

Actually, I was relieved that it was nothing worse. Also, Id used Google to check out my symptoms, and MS was the most likely possibility to cover all of the above, so it was no surprise. Sometimes Dr Google is right (!), but it still needs an expert in this case a neurologist specialising in MS to make a diagnosis.

Ive been referred for an appointment at an MS clinic based in a local major hospital in a months time. Ill post again when that happens to follow up.

Lola-Lee
26-05-18, 10:06
So sorry to hear that hanshan.Is the hospital John Hunter?:hugs:

hanshan
26-05-18, 11:43
Hi Lola-Lee - Thanks, I'm just so glad it's hit me in my early sixties when I'm winding down anyway. Yes, it's John Hunter Hospital and the doctor in charge of the MS clinic is originally from Germany, with lots of experience, so I'll be in good hands.

Lola-Lee
26-05-18, 11:50
I don't know the Dr,but I have seen a physician at that hospital and he was very good, I lived at a place called Dungog years ago.I wish you well hanshan.:D

hanshan
26-05-18, 12:51
Thanks again, Lola-Lee.

pulisa
26-05-18, 17:37
My very best wishes to you, Hanshan. No matter how prepared you were for the diagnosis it must still be a shock. I'm glad you have confidence in your Consultant and will be looked after by a team of experts in the MS field.

Please let us know how you are and how you are coping? You have always given wonderful advice and help to people on NMP and if in some small way we can offer you support then please tell us?

KK77
26-05-18, 18:26
Sorry to hear this, Hanshan. Very unusual for MS diagnosis in your age group but you have pragmatic attitude and I wish you all the very best.

Magic
26-05-18, 18:36
Hello Hanshan, I wish you well. There is treatment out there. All the best and sending you:hugs::hugs::hugs:

hanshan
27-05-18, 01:26
Thanks guys. I really appreciate your support - it means a lot. The usual MS diagnosis (I have learned) is female by a ratio of 3:1 and aged in their 20s-30s, but around 15% are late-onset (around 50) and the male-female ratio is about even. My first episode of facial tingling and numbness dates back to the early 2000s - I can't even put a definite date on it. It lasted a couple of weeks, then cleared up completely without me doing anything, and I thought it was just a pinched nerve at the time.

But the good news is that there are new meds to slow or stop the progression of the disease, and lots of research going on. Also, in my particular case, I feel fairly normal just sitting at the computer - it's only when I get up and try and move around that it kicks in - lack of balance and rapid fatigue. But I can say that anxiety and depression are far worse!

My appointment at the MS clinic is still not for another month. I have a vague feeling that it is like getting married and meeting the relatives!

Hollow
27-05-18, 22:07
Hi Hanshan,

Sorry to hear that, wish you all the best in your recovery.

hanshan
28-05-18, 12:37
Thanks, Hollow - I'm travelling well, and hope that treatment to come will be helpful.

SmilingAlbert
08-06-18, 19:45
Sorry to hear this Hanshan.

As others have said, you are so helpful and kind to so many on these boards with your advice and wisdom. I hope the NMP community can repay you in kind as I dare say they're others with MS here.

Best wishes,

Albert

pulisa
08-06-18, 20:26
I hope you are ok, hanshan. It must be very hard having to cope with your MS symptoms. I hope you will not have to wait too much longer for your hospital appointment with the MS team of experts.

MyNameIsTerry
09-06-18, 02:43
Hi hanshan,

I'm really sorry to hear about this. I rarely look at this board and have only just seen this. I wondered why you weren't around as much but thought you may be taking a well deserved break and perhaps having some time reading through all the documents you scanned before you left Japan.

You have been one of the members on here that I have learnt the most from. There will be many members who have been appreciate of your advice on here. So, I hope we can give you some support back.

Take care. I hope you are getting the best possible care and that there are support groups if you need them.

hanshan
09-06-18, 11:37
Hi Albert, Pulisa and Terry - Thanks so much for your well wishes and support. It does mean a lot to me. There are thousands of people who visit NMP, so statistically (unfortunately) some of them will have MS. I hope my story can be of help to anyone who has, or fears they may have, MS. As I've said, anxiety and depression can be far worse. My appointment at the MS clinic is still about two weeks away on 26 June - I'm guessing that I will get a full assessment then or shortly after. I've been living with the illness slowly progressing over several years, so that's not new, but the diagnosis is, and the amazing thing of being able to look inside my head in great detail in the MRI scans! I'm determined to keep a glass half full approach, and I'll be sure to post after I have been to the clinic.

pulisa
19-06-18, 13:26
hanshan, do you think that your pregabalin is helping with your neurological symptoms and pain from the MS? I know that you haven taking it for a while and is it possible that it could have been containing some of the MS symptoms?

hanshan
20-06-18, 01:06
Hi Pulisa - I think it's definitely a possibility that pregabalin is helping in some way. I don't seem to have much in the way of nerve pain, although not everyone gets that. Nevertheless, it could be that pregabalin has been keeping that quiet. I do get painful leg cramps from time to time, but they only last a few seconds, and I find magnesium helps. Also, people with MS are more likely to experience anxiety and depression, but my mirtazapine/pregabalin combination is almost certainly helping to keep me on an even keel.

pulisa
20-06-18, 08:55
I'm glad that this combination has been so successful and beneficial for you, hanshan. It's not that long until your hospital appointment now and I do hope that you will helped and reassured by the expertise of the MS team.

hanshan
21-06-18, 13:41
Thanks, Pulisa. I'll post again after I come back from my appointment.

pulisa
21-06-18, 17:45
Please do, hanshan. I'm sure the first appointment will be a bit daunting and there will be a lot to take in and significant new people to meet but I do hope that you come away from the hospital feeling supported and strengthened by the MS team. I'm sure you will as their expertise in this area will be second to none.

pulisa
26-06-18, 19:39
I hope you were satisfied with how things went, hanshan. I'm sure there was a lot to take in.

hanshan
02-07-18, 12:13
Hi Pulisa - Sorry to be a bit slow in getting back. As you said, lots to take in, which takes a few days to digest. I spent some time with the registrar, as she took a history and did various neurological tests (strength, coordination, reflexes, sensation, and eye movement are ones I remember), then a short introduction to the head of the unit and to the specialist nurse, both of whom I will be spending more time with at a later date.

She has organised for more tests to be done - a lumbar puncture to take cerebrospinal fluid for analysis and an eye test. I already have a diagnosis from a specialist in the field of MS, but I suppose they feel they have to add their bit to the diagnosis! The appointment dates for the lumbar puncture and eye test arrived in the mail today - the lumbar puncture is not until the 8th August, so some more waiting. Hopefully then I can discuss treatment and things like lifestyle adjustments. I'm getting around okay at the moment, but for example I have to be very careful getting in and out of the bathtub, and hanging clothes out to dry on the clothesline in summer under a hot Australian sun can feel like climbing Mount Everest.

Nevertheless, I like to keep a positive attitude, and I am even thinking of ways I can do some overseas travel, so long as I do it in the cooler months and have mobility adjustments in place. I'm doing some Chinese language study at the moment, and would love to have the chance to visit China and see more than Hong Kong.

pulisa
02-07-18, 21:02
There's absolutely no reason why you shouldn't plan for this, Hanshan. I'm sure the MS team will be able to advise you on this when the time is right for you to travel to China and Hong Kong. I admire you for your ability to study Chinese-I'm a linguist but only in the easier languages (I do have an "O" level in Swahili for my sins though!)

I've had a lumbar puncture and can remember having to lie still for 4 hours afterwards to prevent a headache. Also evoked potential tests but I expect you have been through all that already. As you say, I'm sure the MS team have to make absolutely sure that you have a diagnosis of MS and this involves a battery of specific tests. I always thought that a lumbar puncture was essential for a diagnosis but maybe this has changed.

Thank you very much for updating us. I hope the Chinese language study is going well. Please take care when hanging out your washing!!

Mindprison
03-07-18, 00:14
Just wanted to wish you well Hanshan, you've been great support to a lot of people on here so it's heartwarming to see it being returned to you in kind.

As you say, there's plenty of treatments to slow the progress and research is being done all the time so who knows what the future will bring?

Not a nice diagnosis, but it could always be worse! One of my old colleagues has had MS for almost 30 years and is actually in better shape than I am, so it's not the be all end all!

claire92
03-07-18, 01:53
Hanshan,

Just a quick message to let you know my mum has had MS for years now and she handles it really well. She still works as a tour guide so she's on her feet all day and she does absolutely everything she wants to do. She's planning on travelling to S E Asia with me in December/ January and it really doesn't affect her life. She doesn't take any meds, but what she does do is pilates, she eats a mainly vegan diet, she does meditation and she maintains a very positive outlook. I'd really recommend following some of the same procedures. Good luck with everything! :)

MyNameIsTerry
03-07-18, 02:31
Hanshan,

I woman from my city walked the London Marathon on crutches this year. She has MS. Prior to this she has also completed the Potteries 'Arf Marathon in her wheelchair. So, I believe if you want to do it, you will because you have a positive mental attitude and that's half the battle with anything. Maybe you will walk the wall?

Are you getting any support from peer groups? Maybe they can give you some ideas about what you can achieve and what allowances you may need to make to pass you goals?

You are one of the most respected members on here in my eyes and as such I'm sure many of us will be around if you need us.

hanshan
08-07-18, 05:16
Hi guys thanks for your messages of support. Usually when I wake up is the trickiest time, when I have to reset my mind to the new reality. Pulisa I definitely wont be trying Swahili! I have a secret weapon with Chinese in that Ive had exposure to the characters in Japanese. Its weird that when Im reading Chinese the sound comes out in Chinese, but the same character comes out in Japanese when Im reading Japanese. Im also not looking forward to the lumbar puncture...

Mindprison the research is amazing. Almost every day brings something new, and I think they are getting close to being able to stop the progression of the illness and repair the myelin on damaged nerves.

Claire92 the pilates and vegan diet are good ideas. I get spasticity in the legs, and they need stretching. Ive also read a recommended diet that avoids most products from land animals (including dairy), but does include fish and seafood.

And Terry a marathon on crutches, maybe not for me! Ive only made indirect contact with peer groups by accessing their websites. However, Ive been recommended to directly contact the Australian group as they can organise help through the Australian National Disability Insurance Scheme (NDIS).

More letters have arrived in the mail one with an appointment for a follow-up MRI to add to the other tests, and another saying Ive been prescribed Ocrevus. This is the latest and probably best medication for slowing the progressive form of MS that I have with no guarantees, however. It has to be administered through a drip infusion that takes several hours. Im just glad to be in Australia and now being treated in the public hospital system, because I know I will get good care, and not have to worry about medical bills there are none! The thought of the medical tests does give me a bit of what Fishmanpa calls scanxiety, though.

pulisa
08-07-18, 08:29
I just wanted to say that I didn't have any issues with the lumbar puncture and I had no subsequent headache whatsoever. I just remember being told to lie on the bed for 4 hours following the procedure which obviously worked.

Hospital tests and scans are anxiety-inducing even with those who say they are laid back about such things. It's good that you won't have to be paying out a small fortune to undergo them because this must put enormous pressure on the average person's finances when they are at their most vulnerable.

I know you haven't got any choice in the matter but you seem to have a very measured approach to the diagnosis and your positivity will be very much to your advantage. I do hope the Ocrevus fulfils its potential but I know there are no guarantees..at least you have been given the opportunity to give it a try.

Every good wish to you, hanshan. I do hope that the coming weeks aren't too stressful and that you get as much help and support from the professionals and from those around you as possible.

KK77
09-07-18, 18:06
I get spasticity in the legs, and they need stretching.

This is the latest and probably best medication for slowing the progressive form of MS that I have –

Sorry to hear that you have the "progressive" form of MS, Hanshan, and sincerely hope that this new med helps. Keep us updated.

I was also wondering when the "spasticity" you mention first started, because for a long time you only appeared to have the usual symptoms we all associate with panic/anxiety disorder.

hanshan
10-07-18, 11:44
Hi KK77 - It's a roundabout way that I came to where I am today. I had an episode of facial tingling and numbness maybe fifteen years ago, but it resolved completely without any treatment, and I thought at the time it was something like a pinched nerve or neuralgia. But it is likely that it was the first episode of MS.

From around 2010 I found it was getting increasingly difficult walking distances or staying on my feet for a long time, but I'm talking distances more than a kilometre or standing for the last half hour of a ninety minute class that I was teaching. I thought I was just getting out of condition, and I needed to exercise more, but for all intents and purposes I was getting around normally, except climbing stairs was increasingly difficult, and I would usually take the lift, if possible.

In late 2015, I was standing at the kitchen sink, bouncing up and down on the balls of my feet to try and build up my leg strength when I tore about a 60% cross section of my left Achilles tendon, but still with some movement in the foot. I struggled about, and it wasn't until mid-2016 that it was surgically repaired. Around 4 cm of scarred tendon was removed and the ends rejoined. The end result was that I was getting around on a crutch with both legs weakened, but the left leg weaker than the right.

I had hoped that I would recuperate and would get back to walking normally, but I never have - I'm still going around the house off-balance and using the crutch when I go out. I started wondering why I wasn't getting better. But adding in other symptoms that I was having, like electric shock sensations when I bent my neck, and bowel and bladder problems, I thought maybe there was also some neurological problem. This led to various scans and tests, including MRIs, and the diagnosis of MS about two months ago. But from 2015 on I was telling people I had a tendon injury, even when I suspected there was something more.

Because moving around is difficult, the easiest thing to do is to just sit down most of the time, but that's where the spasticity comes in. The legs have to be exercised and stretched, otherwise they seize up, so I force myself to move around every day. Still, I feel that I need to do more!

KK77
15-07-18, 14:21
Thanks for sharing, Hanshan. Hope further tests yield more light on diagnosis and treatment.

Keep us updated on progress.

MRS STRESS ED
15-07-18, 14:41
sending you :hugs:prayers too xx

pulisa
22-07-18, 14:00
How are you doing, hanshan? I hope things are relatively stable for you.

hanshan
24-07-18, 15:11
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
24-07-18, 15:39
Just wanted to wish you all the very best hanshan. It sounds to me that you are having the best care, examinations and treatments:hugs:xx

pulisa
24-07-18, 17:44
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
26-07-18, 12:46
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
05-08-18, 06:52
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
05-08-18, 08:31
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
07-08-18, 10:13
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.:D

KK77
07-08-18, 11:44
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.

Thanks for update, Hanshan.

I read that SSRIs Fluoxetine and Sertraline "potentially" have neuroprotective characteristics in neuro diseases such as MS. Also, Amitriptyline has been found to promote neurogenesis, along with a few other SSRIs and SNRIs. Aspirin has been found to benefit MS patients' apparent increased risk of cardio diseases along with MS-induced fatigue.

Some of the apparent "benefits" can be tenuous but I know your knowledge of meds is extensive, so that will stand you in good stead. Ultimately, it's a matter of trial and error with these meds and I know you've been on a stable regimen for a long time now.

Good luck with upcoming procedure and sending you positive thoughts.

Lola-Lee
24-08-18, 11:14
Just been thinking of you hanshan,and hope you are ok :)

pulisa
24-08-18, 12:48
Let us know how you are when you can?

MyNameIsTerry
08-01-19, 23:36
Just wanted to give this a bump in support of hanshan. I hope things are going well for you. :hugs:

There's no pressure to respond, you have enough on your plate, but I think it's important you know this place is here for you if you need it.

Lola-Lee
09-01-19, 03:22
Wishing you well hanshan :hugs:

KK77
09-01-19, 15:06
I was thinking of Hanshan only the other day and that he'd not posted an update for so long. Very thoughtful of you to bump this thread, Terry.

Hope you're managing, Hanshan. Remember we're here to support you should you need it :shades:

pulisa
09-01-19, 19:10
I hope things are manageable, Hanshan. Please update us when you can?

MyNameIsTerry
13-01-19, 00:37
Thanks KK.

There can be so many situations going on in this forum, let alone our lives, that it can be hard to keep track of everything. It's perhaps more notable when it's members we are used to talking to, and often in a less anxiety focussed manner, who I think can be unassuming people who spend more of their time helping others so the likeminded feel they. It's always nice to see them rallied around when it's their time for some well deserved support.

KK77
08-06-19, 21:53
Wanted to bump this thread. You haven't been forgotten, Hanshan, and I hope you are coping with what must be a big life change.

MyNameIsTerry
09-06-19, 14:29
Thanks for bumping, KK.

All the best to you hanshan. We are here if you need us but if not we just hope you are well and enjoying your life.

Lola-Lee
10-06-19, 09:27
I was thinking of hanshan yesterday as we were riding to the Hunter Valley.:hugs: