Last reply 1 year ago
New Symtoms

Hi All, I am new to this site and normally try to avoid things like this and try to keep positive…..
however I am ready to admit I probably need some support….. I have been Diagnosed for 13 years
and am going through a relaspe now – I have had new symptoms and to be honest i’m not sure if they will get better or i am on a slippery
slope, my consultant is crap and i am not very happy with her – I have had numbness on my left face for over 3 weeks, I am dizzy, I cannot concentrate very well
I am extremely tired, more than usual and have developed choking on thin air…… I also notice today my speech was a little laboured and when asked to fill out
some paper work today i really struggled writing certain words……… I have also had extremely itchy skin and what i have read as the bug feeling – non existent
bugs climbing up my legs……. these seem a lot of symptoms to have all at once which is why i am a little worried. My Neuro said i did not need IV steroids and just to get an MRI and ride ti out!!! does this seem reasonable? Will they pass ??? Thanks in advance

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stumbler
1 year ago

Hi @edwardskate and welcome.

Your body seems to be telling you to take a break and rest up. And, it’s always advisable to listen to your body.

IV Steroids are usually prescribed for life-impacting relapses, e.g. visual or mobility issues. The Steroids do not make a difference to your recovery outcome, although they would speed the process up. Steroids are therefore not prescribed “lightly”.

Any recovery from MS activity is down to you allowing your body the time to recover. So, feet up and break out the wine and chocolate.

The MRI would be useful to see how your MS has progressed. This might provoke a discussion about your Disease Modifying Treatment (DMT). Aubagio is one of the first line treatments, so you may need to step up to something more aggressive.


tracyd
1 year ago

How frequently do you have MRI’s with and without contrast taken ?
Has this relapse been confirmed with an MRI and a formal review with your neurologist ?

Sorry but this is going to sound quite blunt,

but if the answer to those questions isn’t ‘within the last year or since hte relapse started, and yes then :

– you need a new neurologist who is an MS specialist,
– you need to do some research on DMT’s and chose the weapon you want to fight back with
– you need to stand up for yourself and make sure you get treatment and not left to progress unchecked

IV steroids can help reduce inflammation in critical relapse instances but they do huge amounts of damage used frequently and without justified reasons (like they’ve done an MRI and not confirmed there is inflammation)


edwardskate
1 year ago

Thanks Both
Yes tracey i have mri prob every 12 months i have seen my nuero and i have mri booked tomorrow and then repeat meet up with her on tuesday i just feel she rushes me through appointment then escorts me out the door. I am a strong business minded women but i don’t know how she does it i don’t seem able to get my words out she just over takes everything and i come out feeling fleeced and non the wiser…… I struggled finding a neuro in brisbane that specialises in ms but think i need to shop around again.
I think last mri was with contrast i cannot see it on this referral whichis stupid ……..


us-emma
1 year ago

Use those skills you have as a Strong Minded Business Woman!

As one myself I know how strong we can be in our chosen field- how do you prepare for a critical meeting at work?
Maybe:
Develop an agenda
Make a list of things to be addressed
Assign tasks to members of the team
Don’t adjourn until all items are addressed

So use this with your Doc
Make a list of questions you want answered @tracyd and I can help you with this
Show your doc the list or better yet give her her own copy
Get referrals or plans for each item
For example: what is her plan for your fatigue?
Do you need a referral to a specialist in Bells Palsey for the facial pain?
Can you get a referral for a speech therapist?
Other items, etc

If she trys to end the appointment prematurely redirect her to your “Agenda” and let her know y’all aren’t finished.

Use other resources
TracyD and I are happy to brainstorm with you
Use other friends and family members to help compose your list- sometimes they will have noticed things you haven’t
If possible bring an advocate with you (friend or family member)
These appointments can be emotionally difficult even for people who are not usually ’emotional’ people. So that advocate can help back you up with your doc and ensure the doc does not try to side step issues or end the meeting too soon.

All this said- don’t bring 20 Agenda items- but do bring the top 5 at least. You might even list at the bottom things you would like to address in the future. Encourage your doc to keep her copy of this Agenda so she has this written record. Date the agenda.

List goals you have prior to your next appointment
Ex: When I see you again in 3 months I need this facial pain to be under control
(You will have to change the timeline and goal, just an example)

In business we get things done by holding people accountable. So apply all those good principles you already possess to this situation.

You will be Un-Stopable!

Take care,
Emma

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