Sharing with Family for the first time

[Cathy1114]

Hi, I am new here and you have a great forum!   It appears that I will be getting my official diagnosis for relapse-remitting next time I see my doctor.  

I already have seen this doctor a few years ago.  Since then my mri has had changes and I developed new symptoms in this past flare-up.  I told her everything I have been experiencing lately- some was not ms related but she didn't clarify what was and what wasn't.  I know for sure some of the symptoms but not all.  She also told me that if the eye doctor found optic neuritis, I would get my clinical dx.  Otherwise, she would consider it a clinically isolated syndrome. Either way, I will be starting Gilenya soon. The eye Dr did say I was consistant with optic neuritis.

My problem is explaining to my family my symptoms.  I don't want to share everything - bladder and bowel issues. Besides, I would probably be telling them some of my other problems mixed in without realizing the difference.  When they ask what are my symptoms, what is the best response?  

Thanks for your help!

[Cathy1114]

The waiting is over and I received my dx today.  Thank you for all your input.

[kwarendorf]

Hi Cathy-  Sorry you are being considered for membership in our club.

I think most of us have both visible and invisible symptoms. When I told my family my visible symptoms were very visible, so I left the invisible ones oout of the discussion. You know your family and will be able to find the right mix :-)

Kyle

[essdipity]

MedHelp doesn't allow email addresses in posts. However, you can accomplish the same thing by sending a PM (private message) inside MedHelp. See My MedHelp--inbox, at top.

Or, beachbaby, just post the URL here. I think I know the one you mean, and it's really one to remember.

ess

[Cathy1114]

Thank you, Alex.  Valuable information.  I am glad you shared with me!

[HVAC]

My husband did not want to hear about it for the first two years, He did not even want to know what kind of MS I had which for me was PPMS. He hoped if we did not talk about it it would go away. Plus he hated how it had taken over our lives. We went to a couple retreat on Communication from our local Chapter of the MS Society. It helped a lot.

You can share what you want when you want. The other reaction I got from my husband and brother was silence which was hard for me. I guess people just do not know hat to say. My husband heard me say to a friend how hard that was for me and then he started talking.

The main thing is everyone you love is now affected by MS and everyone will react in their own way and that is okay.

If people say but you look great they are just trying to make it better they are not saying you do not have MS.

You might also get friends or family who send you every article on MS. My friend sends me the most odd ball things like eating parasites to help the MS. I always look at peoples motives not their words or actions. If their motives are good its good.

Be patient and realize family members may feel it is an unfair burden on them as well. No one asks for this not us and not them.

Hang in there the first year of diagnosis is a roller coaster ride of emotions this is normal.

Alex

[Cathy1114]

Thank you Laura and Sarah.  Yes, I have the fatigue, balance and dizziness. I will try to weed through the rest.  You may have to correct me or I may miss something.  

Besides the optic neuritis and bladder/bowel and what you mentioned, I can add cognitive issues, coordination, ms hug, weekness in hands, arms and legs, tingling and sometimes burning in hands and feet, painful muscle spasms and stiffness. I have had migraines and tinitis for a while now which is why I initially had a neurologist. Too much?

Things are starting to subside now but some are holding on more. I hope these continue on an upswing and don't stop improving now...

If all goes well with the medicine, I am not planning on discussing either the CIS or dx (whichever I get) with my children until after their finals.  They are only aware that I have a neurologist.

I appreciate the help muddling through this! Thanks.

[SarahL2491]

guess try not to overwhelm them all in the beginning, as Laura says, just an overview and they may have questions of their own.

The MS website has some wonderful lending library books on caregivers of MS (in any capacity) that they lend out free to us.  Also most bookstores have some dealing with how to tell families.

Not all families understand or want to know about it.  Mine do not like details and are constantly confused about the drugs, although I tell them over and over that the DMD drugs will not go backwards and fix things, they say they understand and then we go thru it all over again!

So, as Laura says, welcome and we ar here if you want to vent, yell, talk, ask questions, we don't always get it right or agree but we are all family here; we all understand where you are coming from

[Lulu54]

Hi, Cathy.  Welcome to the forum - this is a great place to be asking questions and sharing thoughts.  Don't be too sure about getting a dx until it actually happens - neuros often change their mind anhold off for a while longer.

it's good to read your neuro understands CIS and is willing to prescribe DMDs at that point - I wish more understoood this.  

As for explaining to your family, perhaps the best thing would be to refer them to a website that has lots of information, such as the one by the NMSS - thq]at would give them an overview of the disease without be specific to your case.

What other symptoms do you have besides bladder?  You should focus on those such as balance, dizziness, and fatigue.  Those invisible symptoms are hard to describe.

Good luck with this next step, Laura