MS in all its glory

cj maxx

No I haven’t had any of those symptoms so I can’t help . Is there anyone else from a speech therapist you can see . Have you contacted your MS nurse about this ?
Though my leg and foot are killing me after my last fall. Another trip to A&E on Monday for an X-ray . Typical , the first time in years I had to go and 2 weeks later I’m back

tohaltuwi

I would be more inclined to go to a minor injuries clinic for the Xray rather than spend 25 hours on a chair in A&E, but I’m Dublin based. Well and good if it’s not broken and even if it is, might be managed by the clinic as when happened when I broke my foot. Any way of avoiding the horrible ED. But if you are located well away from one of these facilities you don’t have that choice.

MS nurse, lol. My one and only attempt to contact her was met with “return to your GP”. SVUH is a joke of a hospital, they managed to fail to see one single one of my MRIs and told me diagnostic process has to start at square one again, even though I have symptoms of advanced secondary progressive MS. I have a complaint in with the Ombudsman. Several other people I know first hand, have had this fate in SVUH, and the clinic doctor even had the gumption to say “records can go astray when you get MRIs taken at a different hospital, it’s not at all unusual for a patient to find themselves in your position”.

Also she had the gumption to say “at least you don’t have Motor Neuron Disease or Parkinson’s “.

Completely tone deaf staff at that clinic.

cj maxx

Strangely I got diagnosed in SVUH and thought it was OK , though I had my ex-wifes private Insurance so probably made a massive difference . Also that was in 2015

cj maxx

No minor injury clinic near me and I'm in NI . I 'm pretty sure nothing is broken as it's getting better, as in sharp pain when I stand up is gone. Though there is still pain standing on my right foot and the back of my leg (hamstring ?) so I'd like to make sure as walking on a stick is hard when you can't put weight on your 'good' leg.

tohaltuwi

https://www.boards.ie/discussion/comment/122381087#Comment_122381087

private insurance wouldn’t make any difference in a public only clinic which SVUH MS Clinic is. None of the consultants are seeing patients privately as they have full case loads with increased population & not enough neuros coming on board. Other people I know from MS Ireland socials have had similar experience of the clinic as myself. One was attending 3 years before diagnosis, files getting lost etc. The single nurse refers you back to GP “unless you are on DMT, although I think they have got an other nurse now. I think I won’t be given treatment now as it’s likely way too late, but the original intention of the Prof was to offer me Ocrevus, but then communications failed and none of my MRIs got to clinic until I hand delivered copies I had obtained recently. There’s a huge overall problem with SVUH, in all departments where communication is paper only.

tohaltuwi

https://www.boards.ie/discussion/comment/122381331#Comment_122381331

It’s a real pity there’s no injury clinic as you are in and out in less than 2 hours, with treatment plan, and really only if surgery is needed are you then referred to a hospital with all preliminary images & assessment t done. You do want to make sure you do the right thing by your “good leg”.

cj maxx

https://www.boards.ie/discussion/comment/122387223#Comment_122387223

I didn’t know the neurologists didn’t do private work now . They did in 2015 . I was there for about 4 years before diagnosis doing mri’s lumbar punctures etc.

tohaltuwi

https://www.boards.ie/discussion/comment/122398675#Comment_122398675

they do in theory, but none of them around Dublin are taking on new patients. Full workloads. It’s worse that trying to get a GP. 2015 is a very long time ago in medicine.

On an up note, I’ve been granted the Ming Term Illness card, with an OT told me was a prerequisite for qualifying for any kind of assistance from the HSE at my age. Not that assistance would be forthcoming, but it’s another piece of jigsaw in place.

eimsRV

hi all,

I was prescribed Baclofen to help with increased leg cramping and spasticity. However it’s out of stock at chemist, who say it’s a supplier issue. Anyone know if it’s a longer term supply issues? And if there is an alternative?

Will check with MS nurse tomorrow too. Thanks!

cj maxx

I had a fall last week which has seemed to ease , but all of a sudden I seem to have hurt ribs . I can’t figure it out

cj maxx

I never heard that , though I’m in NI . The last time I skipped my 6 a day I fell head over arse so I hope it’s not long term

gamerguy1

There seems to be shortage of baclofen for some reason. I get different brand every month luckily. Teva,strides are the only brands available that I can get. Consultant said some people only can get tizanadine which is different drug but same as baclofen he said.

tohaltuwi

I don’t want to say much here, but I got an abject apology of absolute admission of my being wronged,from my consultant regarding trusses I complained about. I had a special meeting soon. Fair dues to the consultant.

Re Baclofen I keep having bits and pieces of products in different sets, none of them add up to total needs. On the other hand plenty of Gabapebtin which does a great job on other things as well as spasticity.

We often get joint pains, as joints get sprained without sufficient muscular support. My GP prescribes rub-on Etoflam gel which is pretty effective. I find this really helpful in some forms of MS pain.

just over a bout of aspiration pneumonia of left lower lobe, pending respiratory consultant as this is a recurrent issue .

Gabapentin is a drug that in my experience. I’m on 300mg taken later in the day, but this dosage isn’t set in stone. Start off with minimum, that’s essential. Of course it has side effects, but in my own particular experience of 300mg it greatly finishes the intense restless leg syndrome I get right side in particular, indeed finished the entire “restless body” syndrome that is the core of it. It reduces spasticity too.

My personal advice re Gabapentin Side-effects: over first 5 days let the drug bed-in: don’t do a trying serious, don’t drive or operate machinery, see how it goes. Often the negative side effects then settle down

One common side effect that may remain is a very slight twitchiness of muscles you may feel drowsy, yet it’s not quite like a sleeping tablet in that you can keep yourself pretty alert, alert enough to drive. In fact you can be quite focused when driving and less easily distracted, on lower or familiar doses. You need to be are and careful no matter what.

gamerguy1

tohaltuwi you are taking both baclofen and gabapentin for spasticity and spasms,that's quite a high dose of something that has quite the same effect on that symptom. If your consultant is happy with that so be it. Not everyone gets side effects from them but they do take a few days to settle in. I only take baclofen and don't notice any relief from it but if I don't take it then I'm a mess so maybe it does do something

tohaltuwi

https://www.boards.ie/discussion/comment/122436313#Comment_122436313

https://www.boards.ie/discussion/comment/122436313#Comment_122436313

I’m on Gapentin specifically for the Restless Limb Syndrome which was intense and keeping me awake night after night, I take it in evening ahead of bed, it works very well, 300mg. I take Baclofen for the widespread muscle spasms, but of course chemist has run out, I’m supposed to be on 3 a day but 2 really did the job most of the time. I’m just having to do with less as supplies remain short.

My biggest concern these times especially is the recurrent pneumonia.

tohaltuwi

Had an interesting meeting with consultant, who couldn’t have been more empathetic. Hasn’t altogether ruled out treatment but explained very well why for the present he is holding it off. As things stand presently I would succumb to cancer or sepsis for a very toxic drug that has marginal efficacy in Progressive MS. Be put it way more nicely that that. However there’s the respiratory consult to see, also back to the surgeon.

gamerguy1

Foot cramp and spasm for the last few months, baclofen doesn't do anything for it. A good massage on it with tennis ball is helping more. This humid warm weather is the cause of it I think.

cj maxx

https://www.boards.ie/discussion/comment/122470491#Comment_122470491

I had that a month ago. Baclofen helped with leg cramps but not with the foot ones . It seems to be heat/ humidity related

cj maxx

Finally relaxing after a fall . 2 seconds to fall over and 10 minutes to get back up .

cj maxx

Back in my chair . 15 minutes trying to get on my feet after a fall

gamerguy1

It does take ages to get back up for me too if you have a fall. Totally takes all your energy struggling to get back on a chair. I just make sure I don't fall.

cj maxx

https://www.boards.ie/discussion/comment/122569716#Comment_122569716

Thing is whatever about tripping when I walk , I find myself having to grab doors /walls or anything just standing still .

gamerguy1

Furniture walking I call it, it's something ive been done for 10 years no matter whose house I'm in. I use rollator now and don't have to worry about that. Should get yourself to a physio and get that falling sorted before something is broken.

cj maxx

Has anyone here got the shingles vaccine . I rang my GP practice yesterday and they were supposed to ring me back to see if I qualified by being immuno suppressed .

cj maxx

Not fit to do anything today .

gamerguy1

Same as you. This warm weather is lovely but my legs hate it. Not able to do anything

gamerguy1

You know things are bad when I have to use my hand to lift my legs getting into a car. I seem to be progressing faster than I thought. Was able to drive last year and now I struggle to get in a car. My driving days are over. Didn't think that was happen so fast. Even the cooler weather isn't helping me.

cj maxx

‘ good news ‘ I got an appointment with a neurologist for the first time in years .

cj maxx

I went to town yesterday to do a bit of clothes shopping . Never again . The shop was very warm and my energy levels just disappeared. I had to lean against rails and counters to prevent collapsing in it

GBX

I have previously filled in and returned the driving license form and notified NLDS of my diagnosis. I have RMS - apart from my initial flare up, touch wood, I have not had any other issues. The form was completed with good for 10 year box checked.

I was got a quote recently for motor insurance and declared the details on the call with the rep but they have no mention of it on the quote they have sent me. I've questioned it with them which they have yet to come back on. I know insurance companies will look for any out if there was a claim. Has any one else had similar on quotes if you are on the 10 year exemption (if that is the correct term?)

eimsRV

my leg cramps and restlessness legs has certainly eased with the cooler temps.

My brain fog and focus is becoming a bigger issue, especially with work. I’m managing at the moment but thinking longer term, I thankfully have good income protection thru work. Have others been able to reduce hours and get some payment thru income protection? Or is it a case of all or nothing? I don’t want to completely stop working but feeling the added stress isn’t helping my over all health.

cj maxx

https://www.boards.ie/discussion/comment/122787882#Comment_122787882

I can’t answer that as I was unemployed when diagnosed , ( manual labour ) but it’s not all or nothing . See how it progresses and make decisions on where you are . I know of people with MS who are retired but well able to work, etc