Is it time for reality check?

[sardi_g]

I don't really bring up the ms topic with my family. My dad's a retired neuro-radiologist but seems to be in denial about this disease and doesn't seem concerned. He was also in denial when I approached him with symptoms over the years. But that's why I don't want to rehash it all.

I know this disease manifests differently for everyone and there's no predicting the course but I'm wondering if I should accept that the odds are that I'll have a less than benign course. And should I mention this to him and ask for some help w/ possible future scenarios.

1.5 T mri says I have over 75 punctate and confluent deep white matter cerebral and cerebellar lesions in frontal, parietal, occipital, temporal lobes, pons, medulla, and bilateral cerebellar hemispheres. Three lesions extend into cortex. And on undersurface of corpus collasum, particularly genu and splenium. Also greater than 25 "black holes" in frontal, parietal, cerebellum, and pons.

Does anyone else have a similar lesion load and would you care to describe how you're feeling in general. overall I think I'm doing ok edss-wise - with some exceptions. And normal ventricles, so low atrophy?

If you had the luxury of asking for help for future developments, would you address this with whoever had the ability to help? What would you ask for if anything? Or should I not throw this in anyone's face. I don't really know how to approach it myself.

Thanks for reading.

[Marco]

Unfortunately, past history is a predictor of future behavior. Based on what you said, I would leave your dad in retirement. With dad, there are deep-seated emotions, decades of history and some level of denial. You need a doctor that is going to look at things objectively and be honest with you even when it hurts. Maybe one day your dad will catch on or maybe he won't. That is his burden and not yours. Your burden is to ensure you have the best medical team on your side. He's been dismissive in the past and probably will be in the future.

Stress is one of your major enemies and you must take steps to reduce it. If rehashing the situation with your father will bring you MORE stress than avoid it. I understand your dad has the ability to help, but so far has lacked the willingness to do so. A doctor that cannot fix his own family is often angry about the situation. I personally would not bring it back up to someone that did not have ears to hear. It doesn't mean you don't love or respect your father, it's just you need more help than he can provide. Some people just are not well-equipped to me in your support network.

Someone that is going to be a helpful support resource will:

• Listen to your concerns and needs without judgment.
• Help you brainstorm ideas for YOUR benefit. Be a sounding board.
• Be supportive of your emotional needs.
• Someone that is willing to share their resources with you. This could be taking you to a medical appointment, spending time with you, helping you research something, just being present, etc.

I would not throw MS in anyone's face. It's not their fault you have MS. I called a few people to come visit and discussed my situation with them one-on-one. I asked if they might be willing to help out and what might they be willing to help with. I already had a list of things I needed that I shared with them. People signed up to help and the majority of them followed through. It is not easy asking for help, but having help makes such a difference. You can also call your county health department and see if they have any social workers you can talk to. Social workers often have a list of resources that can help. A new non-profit just started here that will transport your pet to the veterinarian for their annual check-ups. You might be surprised what resources avail themselves to you, but that requires asking.

I wish you well and welcome and follow up questions or comments.

[sardi_g]

I'm so glad you answered Marco that makes so much sense. It would feel so awkward and you're right I'm looking for something on the emotional side but you're helping me see *his* side. I'm not a parent but I can imagine the emotions if I think about it more.

This disease is really testing me and how I see the world and myself. I'm allowing myself a little slack but in general I've got some areas to work on.

Thank you for the reminder there are a lot resources out there. I may never need them anyway! Such a strange disease. I'm doing well now and should focus on that.

Yes stress is a problem at times. But there are tools - meditation and I like the zencasts.

Thank you so much again for your wise and thoughtful answer.

[KatieAgain]

You hit the MS jackpot with you dad being a Neuro-radiologist. I too am from a medical family. Same here complete denial. But they eventually came around. Took several years.

I have about 30 brain lesions, 15 years into this disease. You know what my biggest problem has been is C-Spine lesions. I have had a few sets of them and all have healed and disappeared. But I have had two pretty serious MS complications because of C-Spine Lesions.

When I was in the hospital recently, I told the Neuro I would rather have 30 more brain lesions than another C-Spine Lesion...he agreed.

Neil Cavuto the head anchor on Fox says his brain is Swiss cheese...it has so many holes. I know people with a few hundred brain lesions. I know a few with less than ten.

And me...I feel relatively good physically when I don't have C-Spine Lesions. I however have two brain lesions that really whacked me, but the symptoms are controlled with meds.

No...don't throw in the towel yet. The brain is remarkable...the spine...not so much. And give it some more time with your Dad...you are still his baby.

[sardi_g]

The cervical lesions at c4,c5 are not present anymore but there's still an ovoid at c2. But I have never had l'hermites or anything that took me to the hospital besides optic neuritis. So silly to create all this drama and fear in my head when physically I can be grateful.

I hope you're feeling better by the day. Sounds like you've been through the ringer lately!

Swiss cheese. Lol. It helps to feel less like an outlier.

My dad has come around in many ways and is now so considerate regarding the temperature when I visit. We're just on opposite sides of the emotional spectrum. : )

Thank you Katie, your responses are equally sagacious. (thumbs up icon that I don't know how to add) And I've always wanted to thank you for the employment advice you gave on an earlier thread. I'm preparing to start tutoring math again so I'll be 'forced' to be more social. : ) Actually I'm not too shabby at establishing a friendly helpful rapport. : )

[Jules A]

Exactly what kind of "help" are you interested in securing now?

Many of my family members are in medicine also and they can't bring themselves to even consider that I won't be strong and independent forever.

My strategy is to work like a fiend now and bank enough money now so I can afford to pay someone to take care of me when the times comes. I don't know what else to do.

[sardi_g]

That's really all we can do. I definitely view my savings in a new light and just want to keep adding as much as I can.

[Temagami]

Sardi,
There are lots of neuros out there that can provide the medical opinions you seek. You have only one dad. I would lean on him for practical help if he can´t be a source of emotional support. If you need a ride, reorganization of your kitchen, moving furniture, cleaning patio furniture. Then if he seems to feel good about helping, you could ask him to help you research various assistive devices. You could also go on the MS Society site and find the document that lets you come up with a plan in case you have to go in for treatment. It has questions like who will take you there, care for pets, mow the yard etc. You could ask him to work with you on the plan. You would think that he knows you are scared, but maybe for him it is too scary to think about his baby facing a difficult situation- that makes it all about him, but he went into a branch of medicine where he read the images and did not spend lots of time with face-to-face encounters with patients, yes?

Some good news- they are now seeing positive effects from MSers recouping function by doing what stroke victims do- force yourself to use the weak limb by not using the strong one. It rewires the brain. Your brain has already done lots of rewiring.

My symptoms are very diet related and I do think that their is a metabolic piece to this and the inflammation. Honor your gut and all the bacteria who are on this journey with you

Fear is a survival reaction and as long as it propels you to make plans that are realistic and not overload your system with anxiety, then fear is not an unwanted visitor if it helps plan for the future.

Take care.

[sardi_g]

Thank you Jules and Temagami. I'm having guilt pangs thinking I've depicted my dad in a wrong way. And I'm certainly not breaking any records with *my* EQ. Lol.

I think I struggle with the balance of reaching out for support and dealing with responses vs what I'd prefer. Ideally I'd just love to hear everyday how brave I am to deal with this crap lol. I think we all are.

Yes, neuroplasticity! I think I've benefitted greatly from it and am grateful and hopeful for more. And sorry but a little denial is necessary too. But balance. Okay that's enough reality for now!

[Jules A]

Ideally I'd just love to hear everyday how brave I am to deal with this crap lol. I think we all are.
!

Heck yeah!!

Maybe we should say it here to each other because sadly that won't ever happen especially if we don't whine about our daily struggles and I'm just not built that way.

[sardi_g]

Personally I've never had a problem whining. But we really should remind each other how bad we are bc they don't even know the half of it.

[misslux]

I have a lot of people IRL tell me "I'm brave" which I'm not. I just don't have a choice but to deal and handle things.

I also don't whine but I certainly don't sugar coat if someone asks me how I am. Unike a lot of people's experiences, when people ask me how I'm doing or if they can do something for me, they actually do want to know.

[sardi_g]

Maybe if someone told me I'm brave to my face every day I'd start telling them they better keep their distance. But right now I do think we are all very brave.

[sardi_g]

I'm rereading this thread and I'm not liking what's coming out of my mouth. And my self-deprecating humor sounds like I'm being insulting to others, I'm so not.

I'm really fumbling through this whole process. But thanks so much for the responses.

[sardi_g]

And I just want to make clear that it was ME who didn't push for answers before my diagnosis. I was 42 when I started wondering what's wrong. A full-grown adult. I don't lay any blame on anyone else although shamefully I held anger but I don't anymore.