Last reply 3 weeks ago
My symptoms with MS.

Hi everyone im new to this site, my MS nurse advised a take a look.
My symptoms since getting diagnosed 3 and a half years ago are:

Complete numbness from kneck down on both sides.

Sleep insomnia ( Sleep walking)

Neurological bladder

Poor memory

Slurred speech when tired

Anxiety

Moody

List goes on..lol.

Im told there are many family support groups just have not found them in my area yet.

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highlander
3 weeks ago

@sean_minkley
Hi and welcome to the club!
We’re all here to help you out with any questions.
We’ll try and find an answer one way or another.
Under your post above you’ll see some boxes relating to some of the things that you mentioned.
Click on them and it’ll take you to other posts made about that subject.
Hope it helps..
Welcome again 😀


stumbler
3 weeks ago

Hi @sean_minkley and welcome.

It’s good to reach out as it can feel lonely having MS. We’re stronger together.


itsmewithms
3 weeks ago

Welcome, I find this forum very supportive and informative. In your profile you have listed that you are not on any DMT…that is a personal decision but am wondering why that is right for you- is that what your neuro has recommended?


vixen
3 weeks ago

Hello @sean_minkley, welcome aboard. It does seem like you have a lot to put up with! I hope you don’t get all those symptoms at once. Do you have a local MS Society? Or even if not, they would be able to help you locate some support. The others above are right; this site is an excellent source of support and virtual companionship. And you can dip in and out as you feel. All the best 🙂


sean_minkley
3 weeks ago

Thank you for all your comments guys.. much appreciated.
@itsmewithms im not on any meds because my neurologist says he won’t put me on them until ive had 2 or more relapses lasting more than a week a time. I don’t mind though meds could stop me from doing my job.
Im very very lucky to beable to do my trade still.


itsmewithms
3 weeks ago

I was just concerned that your symptoms seem serious enough that they would be serious enough to take action but since I was diagnosed (2005) that they may want to rule out CIS (Clinically Isolated Syndrome) before they allow treatment. I can understand the approach with minor symptoms that are really more like annoyances (as my initial ones were) but you have quite a list started…all these came up on once? or can you argue that they built up over a series of relapses?

I’d be concerned that with more impact you won’t be able to continue whatever trade you have…many of the DMTs may not impact your life as much as you’d think.

Your list of options may be different but there are several places where many of the options are listed out and compared:
https://www.healthline.com/health/multiple-sclerosis/how-to-evaluate-your-ms-treatment-plan?utm_source=facebook&utm_medium=opt&utm_campaign=tysabri-retargeting-ms-desktop&fbclid=IwAR1oCSj5oRuEzJc2B4mTiwvcw_Qnwgsn-3zRzy3mU_s1cjLsvZV59_DYjsQ#the-bottom-line

In this discussion Aaron Boster gets into discussing options at about 30 minutes in:

Good luck working through your issues and decisions…


lisa_morghan
3 weeks ago

Your seeing a neurologist im asuming so your on medication for the MS and your symptoms are this intense?¿? Not sure if you got diq then no doctor so im sorry to hear this!!! Seriously


itsmewithms
3 weeks ago

@lisa_morghan from the response I saw from Sean they could be treating his symptoms as CIS and waiting until it gets yet worse before starting DMTs. I could understand that if the symptoms were mere annoyances (as my original ones were) but from the list I agree with you and a more aggressive approach may be warranted. I questioned if there were actually symptoms that came on over time so it isn’t considered one big CIS and then maybe he can get action? I’m in the US so under a different health system and think I would have received different treatment but, then again, protocols change over time and when I was diagnosed (2005) I never remember the concept of CIS coming up and delaying treatment until it happened again. That is likely due to the insane price of treatment and insurance companies…not in the interest of patients.


wjgregg
3 weeks ago

Dear @sean_minkley,

I am very surprised by the response of your neurologist, given the severity of your symptoms. Your profile says that you have R.R.M.S. Have you had M.R.I. scans in the past to confirm it?

Sadly, this disease does not get any better with time. It is progressive. I had two relapses within months of each other. The second put me in hospital for three weeks, and when I emerged my mobility was badly compromised. I had no trouble walking (albeit with a limp) before I went in, and emerged in a wheelchair. If you are unfortunate enough to have another relapse, your situation will not be better afterwards. There are many D.M.T’s available now. It seems strange that your neurologist is not giving you the best chance of fighting this awful disease. Time for a second opinion/change of neurologist perhaps? Just a thought.

Whatever you decide on doing, good luck for the future.

All the best.

Jon

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