Last reply 4 days ago
I dont even know what title to put

I hate the way everyone is so ignorant towards ms, i always get asked whats wrong and i say yeah im in alot of pain then there like take a pain killer no one understand that by the time it probably reaches my stomach and starts “working” the pain is gone! Then i always say it must be my ms cause im still pretty new to this! I dont know whats me or the ms for some things! Then i get the dont blame the ms and im fine and that its all in my head ! Or if im dizzy people act like its my fault im dizzy i dont know what to do! Im sick of it i hate having ms it has turned everything upside down i cant sleep at night because im crying in pain or just upset that i have this atleast im not numb at the moment and im constantly needing to wee every 5 minutes !

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highlander
6 days ago

@chanelle_1
I get how you feel!
People can be a bit ignorant at times.
It’s nobody’s fault we all are, most of the time to be fair.
I try and make light of it sometimes by making jokes about myself but that’s your call to make.
Have you been prescribed any meds to help with the pain other than paracetamol and the likes?
Your doctor should be able to help with that.
Aaaarg! would have been a good title.


chanelle_1
6 days ago

Im on no medication the doctor said i havnt a serious ms and is better off meds, i honestly think differently but the side affects are so bad and im still fresh to this so im just living atm


highlander
6 days ago

@chanelle_1
MS no matter what is serious….
Put it this way have you ever heard of a benign pregnancy?
You either have it or you don’t no if ands or buts.
Have you had an MRI?
If not they shouldn’t even consider telling you that you have ms to be honest.
That’s not fair on you.


chanelle_1
5 days ago

I have been through spinal taps, EEG’s cat scans xrays blood tests mris with and without constrast in 2 hospitals seen by 2 different neurologists one said i have 7 leisons the other said he could only see 1 and i havnt got it bad which i know other people out there have it worse but still i dont feel like mines as mild as hes saying it to be, my current neurologist is the one that said he could only see 1


highlander
5 days ago

@chanelle_1
Errrm I’m guessing your not from the UK.
Me thinks you should ring the other guy up.
As for meds there are plenty to alleviate your pain that don’t have huge side effects.
The disease modifying drugs can do but not all and if they do it soon passes like mine techfidera.
You should be able to get something to help you manage your benign pain….. sorry for this in advance…. what an arse!
Please call the other guy or any other.


mlgilber1
5 days ago

Do you see a neurologist or MS specialist? I think it makes a huge difference because MS specialists seem to be more understanding. That’s interesting they haven’t given you any meds. Have they given you the option to start a DMT if you want to? Most of my friends don’t understand either. At least some of mine try. Some just straight up stopped talking to me after I was diagnosed. I seem to have a lot of pain so I also see a pain specialist now. Now I swear I have a whole team of doctors… MS, pain, uro, primary lol. Hope you feel better soon!


highlander
5 days ago

@chanelle_1
That was aimed at your prehistoric doctor….not you.


stumbler
5 days ago

@chanelle_1 , I’m sorry that you’re having to deal with all of this at such a young age.

MS is an incurable condition, which makes it very similar to ignorance. What is clear is that we have to learn to manage both, our MS and the ignorance of others, as there is presently no cure for either condition!

However, learning to manage our MS does take some time. We have to get our heads around Disease Modifying Therapies (DMTs), to try and slowdown the progression of our MS, and medications, to help us deal with the symptoms of MS.

And, we will learn to become unaffected by displays of ignorance.

Managing MS is a team game. You need to be able to work together with your Neuro and your Doctor. And, you must all have the same objective. This is explained in wonderful detail be the video supplied in this post, https://shift.ms/forums/topic/therapeutic-inertia . It’s well worth the 40 minutes.

Now, Neuros can be quite arrogant, quite archaic, quite conservative, or just plain arses, as suggested by @highlander. These people are our servants. We pay their wages. So, they should treat us with respect.

However, your present Neuro is very suspect. You either have several lesions or you have one. They need to explain themselves on this issue. Several lesions would suggest that some form of treatment needs to be considered and you should consider this prospect and demand it.

You also need to demand some treatment for your symptom management. Incontinence and pain should never be tolerated, without treatment/intervention.

This can all be managed, then you can get back to living your life.


chanelle_1
5 days ago

@mlgilber1
Im seeing a neurologist he made it out as if the ms meds will leave me with a far bigger problem than what i already have, i havnt many friends to be honest i barely have 1 that we barely talk i just cant face going out in this weather but i remember when the first doctor said i might have ms i rang up my mum she was all shocked and upset and really supportive! Then i rang my boyfriend at the time he bascially blamed me for it but he was a prick still is good thing in a little way i was diagnosed with ms i guess it helped me see whos actually supportive, i didnt know there was a ms specialist or a pain doctor! But im seeing alot of people at the moment a councellor, my neurologist, phsyotherapist, phsychiatrist and a million people in there teams! Also been referred to another doctor for another problem! I cant handle all the appoitments


chanelle_1
5 days ago

@highlander
Im from ireland, i cant ring the other guy up, i was so scared of getting a spinal tap i ran out of the place after him half diagnosing me i guess i needed time to look all this up ive never heard of ms till i got it i hated the sound of a needle going into my spine i just felt like running home so after i said no to the spinal tap he referred me to another hospital then thats where i am now


chanelle_1
5 days ago

@stumbler
Thanks for the link ill deffinatly be watching it when i saw a doctor about my toilet problem this was just after the maybe diagnosis he saw it on file looked at the mri and even he said yeah theres about 6 or 7 leisons so even not a neurologist saw it! I hope something can be done about my bladder i go around dehydrated half the time so i dont wet myself


stumbler
5 days ago

@chanelle_1 , there’s a lot they can do for incontinence, from medication to other methods to make life that much easier.

You just have to get the right referrals. A Urologist is obviously the best bet.

Voluntary dehydration is not a good idea and can lead to other problems. Apart from looking old and wrinkled! And, you’re too young and pretty for that!


jane_watts
5 days ago

@chanelle_1

Chanelle I’m in Ireland too.
Ok you’re like me Run at the whispers of lumber punchure,,,,,,,, were you not offered an ‘evoked potentials?’. They do this test in place of lumber punchure here too. Thanks to another member @leogirl here (again Ireland) she told me about it for yet another MSer on shift.

You do know you can change neurologist if you’re not happy with who you attend. We have to go private to see our neurologist we pay them to get it right & give over information on us as their patient. Plz don’t permit them to fob you off. You require answers, don’t stop til you get em.

Happy Patrick’s day. ☘️

The best of luck
Let us know how you go.


chanelle_1
5 days ago

@jane_watts
No evoked potental was mentioned to me, but the doctor was indian or something i couldnt really understand him i dont want to go through the pain of changing doctors


highlander
5 days ago

@chanelle_1
I’ve worked with a few Irish lasses in my time and one thing I know for sure, is when they go off on one it’s time to run away and hide.
You show them who’s boss.
And With a nice smile that’s even better.. far more intimidating😇


jane_watts
5 days ago

@chanelle_1
If a patient refuses lumber punchure it is their duty to suggest an evoked potentials.
You need someone you understand when they speak Chanelle.

Are you near Galway?

My neurologist, He charges €120 per visit 20/30 minutes long, every six to 12 months, any tests he arranges for you as a public patient in a hospital near you. You tell him one cannot afford private tests. He’s very much the working man’s person, whereby he seriously understands. There’s a way round everything.

I was smiling at a previous comment ok so I were laughing,,,,,, spot on with the Irish women 😂 they’re seriously moody too for no reason,,, no offense to them but,,,,, 🤔🙄😂😂😂


jane_watts
5 days ago

@highlander
Yeah, when we say jump just do it haahaa they’re not all the same but can be moody for no apparent reason 🤔 even I duck for cover was saying to @chanelle_1
I was laughing at the comment but in fairness to you spot on 😂😂😂


chanelle_1
5 days ago

@jane_watts
Im in kerry, i honestly cant afford anything and the neuro i have now i can understand! So thats all good haha im happy with the free one god bless my medical card ❤️


highlander
5 days ago

@jane_watts
A line from Tam O’shanter Robert Burns epic poem.

Gathering her brows like a gathering storm , nursing her wrath to keep it warm……
That’s got it perfectly scary!
😊


jane_watts
5 days ago

@chanelle_1

Chanelle I worked in Kerry !!! Great ppl ye are. Worked in Ballybunion. Lived in Moyvane, know Listowel well, & most of Kerry ! The Bon Secours neurologist there is Helena Moore she diagnosed me on first visit as she ordered an MRI but smart lady was she, she confirmed her diagnosis as she suspected on MRI results. (Bon Secours Galway which is where my present neurologist is.) Helena is much more expensive 🙄
You’re attending Kerry general, I suspect Helena is over neuro there, as my neurologist covers University college hospital Galway & Merlin Pk, along side Bon.
Kerry General I know was good suspect they’re still the same. I know in General practices they had to pull their socks up, fair play they did.

Gosh once I was in Kerry General because of a family member suspected through GP appendix. In, out within an hour the hospital doctor examined gave the all clear. That family member thankfully still has his appendix, I couldn’t go through a night of worry like that again 🙄😂 that little patient then that evening is my 19yr old son of today lol 😂
I’m very pleased to meet you just so sorry it’s here because of MS & you’re suffering.
We on shift are always here for you Chanelle.
Btw I was issued a medical card too, it’s great, were you issued your free travel pass ? I was knew nothing about it, it arrived in post one day about 2 years ago.
Haven’t used it as yet but it’s there if I need too. Has the OT called out to you yet? To see if there’s anything in aids you require? Has MS Ireland been in touch? They have just in the past month with me a lady calls, I’m down for transport to appointments etc. Let me know as I may be able (I’m sure I can) to source a name & number for you. Does the PHN call to you? Again your needs in walkers etc. Each sector pulls together. I’m sorry asking so many questions, any information I have I’m eager to pass on.
💜 (Healing colour)


jane_watts
5 days ago

@highlander,

Yes well perfect.
The Irish genes took over in me. Don’t dye my hair I am the original colouring of the true Galweegeen having been raised in that County one more thing it does perfectly describe us after all we are the city of the tribes but we can slice you in half with a look 😂 yet make a friend of us you’ve made a friend genuine friend sincere friend for life. That’s how we are as I laugh because it’s so true I know Ive first-hand information on this I like many others are just so. 😂😂😂


mlgilber1
5 days ago

@chanelle_1 I don’t have many friends anymore either and was also thankful it showed me who my true friends are. The appointments can get crazy. There have been weeks where I had one every day! The people I know with MS go to neuro once a year, but I see mine every 3 months… I guess it’s ptobably because mines been so active and they said it was aggressive. I hope things get better for you!


chanelle_1
5 days ago

@jane_watts
I was in kerry general i didnt have that woman i had the man with the funny limp i think he has hip problems he kinda kicks his leg up and wobbles i was so scared of him haha, im attending cork hospital my neurologist is brian sweeney at the moment yes i have the free pass a few years ago i was diagnosed with a speech and language problem, basically a form of autism so i have the pass for that but ill be getting the +1 for it so i can have someone with me while im travelling if im ever having a bad ms day with walking or what ever id need it for whats the OT no one has gotten in touch with me or called out because of ms i dont think i need any walkers or anything at the moment my main sympthom is just alot of pain but if they can provide something to help with dizziness maybe a stick or something i dont know id be greatfull i know there is a ms support group in tralee but i have awful anxiety around alot of people i hate it so much and i feel like my ms isnt that bad that id need to attend a support group and ontop of that i dont live in tralee and dont drive so transport to them groups would be an issue


chanelle_1
5 days ago

@mlgilber1
I know the feeling getting one nearly everyday next week i have two appoitments on the same day, how aggressive is yours? Whats your worst sympthom? What are your side affects if your on treatment


jane_watts
5 days ago

@chanelle_1
Hiya sorry a phone call came in hense my delay.

Your OT (occupational therapist) if you ring your PHN she can organize for the OT to call to you. She’ll ask & suggest anything you may need personally or for your home to make life easier.
Walking stick no problem mention this to your PHN that you need one. Have you got a psyiotherapist ? He/she will assess your mobile ability & go through exercises giving you a print out of same that you do til your next appointment usually two weeks.

If you’ve your name down with all the above now, when you do require an item it’ll be delivered to you.
With these ppl on different appointment days (they will call to you) it’s on a one to one.

Oh as regards transport that goes through MS society Ireland (you’re like me I don’t do support groups either by personal choice) which works in conjunction with Enable Ireland. New Scheme of recent, if you have an appointment or need the pharmacy, shopping etc it’s a CE (Community Enterprise) scheme whereby it gives us Independence to as it were do what shopping we require or dental appointment etc you’re collected from home given 3/4 hours getting done what you need too, then driven home to your door, This is usually a mini bus as far as I’m aware.
This is because at last it’s been recognized people with disabilities who don’t have transportation or don’t get out in the community can avail of this service.

Then if you required a PA (personal assistant) to do some house work like hoovering dusting etc if that PA (cos they will have) has their own car he/she drives you to your local appointment.

You’re attending Cork hospital believe it’s lovely.

I laughed at your description of the bloke who kicks out his leg, he could be Helena’s ‘side kick’, pardon the pun, 😂registrar. I always for years called em side kicks then report back to whoever is over them.
Sounds hip but,,,,, he himself could suffer MS. Who knows eh. 🤔
One thing for sure ,,,,, I’d avoid walking alongside him 😮🙄😂😂😂

Don’t know you’re neurologist once you’re happy with him that’s three quarters the battle.

Sorry this is so late, I’m sure you’re asleep at least I hope you are. This you’ll read tomorrow hope it’s of help.

Let me know how you go on.

Thank you for accepting friend request.

Nighty nite 😴 💜


highlander
5 days ago

@jane_watts
Wow……if you were to go on the Apprentice you’d be hired without a doubt!!! Amazing!
👏👏Wow!


us-emma
4 days ago

@channel_1,

I am 16 years diagnosed and a former nurse (so some medical knowledge, but it’s dated).

I would really recommend trying to focus on solving one issue, then moving on to the next.

This sounds like it could be challenging for you (please excuse my ignorance as an American- I only get about half of the local part of the discussion).

I would humbly suggest you start with addressing sleep. Many things get a slight side benefit if you improve sleep. Starting with good ‘sleep hygiene ‘ is easy to do today (goggle that one- lots of easy tips) but you will also need an MDs help with medication likely. My primary sleep agent is Ambien 10mg. Sometimes that isn’t enough- especially when I’m worried or overwhelmed.

I also struggle immensely with pain.

Depending on the source of your MS pain (there are two basic root culprits- treated slightly differently) most of the medicines can also help sleep. For me- I take several muscle relaxants for pain. Some during the day because they cause less drowsiness but another- Tizanidine 4mg 3 tabs at bedtime also cause drowsiness- so 2 birds with that one.

You may have to build up to the 3 tabs of Tizanidine but most people can start straight away on Ambien 10mg.

Maybe those 2 will help you.

Many people also take an antidepressant medication due to the side effect of helping with pain. I was personally never able to tolerate them.

I also have a medicine in the back of the cabinet for “breakthrough pain”. Once your entire pain management schedule is working (may include non-drug therapies) it is not complete with out a safety net for that expected horrible day- but it’s ok- you break the glass- reach for that ace in the hole and know you will be ok.

Just knowing that is in your cabinet is very soothing. My med for this is Soma- Carisiprodol- but there are many drugs out there that can be part of this for you- highly variable in relation to your particular type of ‘worse pain’.

It takes a bit. I hear about your appointment fatigue- I have it too- but between all that try to pick one thing to solve, ask at every visit (like you said a non-Neuro saw the multiple lesions), research it through good sites like shift, https://multiple-sclerosis-research.org, etc- be relentless.

Get that one thing under better control and move to #2 on your Personal list.

The best thing would be to treat the underlying condition causing all this- the MS octopus- not just the tentacles. But maybe now isn’t the time.

Do what you can today.

Be Well,
Emma


chanelle_1
4 days ago

@jane_watts
I was going to a phsyotherapist she said i didnt need her anymore all she said was i have long ligaments and if i needed her to make an appoitment but she felt that everything that i spoke about was over the ms and just to continue what im doing, that transport that your on about would i still be able to get it even though im not completely crippled


mlgilber1
4 days ago

@chanelle_1 Mines not too aggressive thankfully and especially since we’ve gotten it under control with treatment. I’m on Ocrevus and it’s helped quite a bit. Before I was using a walker and not anymore thankfully. I was very fortunate that it made some of my symptoms disappear and others lessened. I’d say my worst symptom is pain. I have a lot of back pain, but we don’t really know what’s causing it. Side effects have been a slight infusion reacting during the first half dose of getting itchy. I did get a UTI and shingles shortly after my infusion which were probably caused by it too, but that’s it so far. I’ve only had my first two half doses and go for my first full infusion in a week. I had my first MRI since starting my treatment a month ago and there were any new lesions.


mlgilber1
4 days ago

*there weren’t any new lesions


jane_watts
4 days ago

@chanelle_1

A definite YES you suffer MS it’s a lifelong debilitating disease. You’re most definitely intitled to use the transportation.

As regards your psyiotherapist?
That’s a disgraceful attitude for her to have, she’s supposed to be trained, therefore she knows physical excercises are vitally important to help keep you where you’re at.
Look to Dr.Boster vids regarding exercises. He feels yoga is very beneficial. Can find these on another channel, don’t overdo it though.
There’s also MS trust in England I find them fantastic, thanks to @stumbler he found exercises for me there that I had lost. I am a subscriber with MS trust have been for years, have found the very informative.

Have you phoned your PHN (public health nurse) ?
Oh yeah that’s right you can’t due to this bank holiday 🙄
Perhaps tomorrow you might get a minute.

My apologies yet again in slowness at replying 🙄
Bloody bank hols bring too many calls family 🙄 They exhaust me ☹️ 😂😂😂


jane_watts
4 days ago

@highlander

Thank you very much for your kind words and vote of confidence……. 😊 You made my year, seriously you have…..

Emmm 🤔 shhhh 😂 between you & me is the apprentice a t.v. programme? 🤔
I think I’ve heard it mentioned quite some time ago, don’t watch t.v you see. But, judging by the title I think I’m getting the jist 🤔 I feel I need to apologise since I’m not very aware of t.v programmes with not watching, I really am so very sorry.
I’ll educate myself to ‘the apprentice’.

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