Obsessed

[Tigergal]

My husband is in the process of getting a diagnosis. He has had a Brain MRI and the neuro said it is probably MS but he will have the Lumbar puncture on 7/26 to try to confirm the diagnosis. I have become completely obsessed with finding out everything I can about MS. I spend hours researching this disease. I stop looking for things and fix meals for our family but the whole time I am away from the computer I am thinking about getting back to it or what I can look for when I get back to the computer. I just want it to be something else and I keep looking for another explanation. I keep concluding that it has to be MS and how horrible that will be for all of our lives. I know I need to quit obsessing but always seem to fall back into the ruts of searching for answers. When the only question I really want the answer to is "Why us?" Sorry to vent just having a really hard time.

[Jules A]

Hi and welcome. There is no "why us" answer unfortunately.

Although I wouldn't wish it on my worst enemy the good news is that MS isn't always miserable right away so in most cases we do have some time to adjust and make changes that might be needed based on our uncertain future. To me as everyone here knows that means getting my financial stuff in order.

The other thing you might explore is that if your husband has symptoms and lesions on MRI the lumbar puncture really might not be necessary unless he isn't comfortable accepting the diagnosis with what you already have. FWIW it can also be negative when the person does in fact have MS. If your neuro isn't aware or disclosing that I'd ask why.

Just something to research in your present "obsessed" phase, which will wear down a bit as time goes on.
Hang in there.

[Tigergal]

Well I was not at the appt where the neuro said he probably has ms so I am not sure what was on the MRI. I was not there becuase I never in a million years thought my husband was facing something as big as MS. So feeling guilty about not being there but I have to move on. According to my husband the neuro said the only sure way to diagnose was the spinal. I am just so stressed and all I keep hearing is how bad this will get with the in between comments like MS is not a death sentence. Well for me it might as well be. I am having a very hard time and I think it is because I keep telling myself that I have to be strong and positive for him and I really want to collapse in the floor and never get up. So all of that to say that I do not know why we are going for the spinal. Thanks for the inof regarding the false negative.

[Jules A]

According to my husband the neuro said the only sure way to diagnose was the spinal. .

Well check into that because he might have heard incorrectly. Spinal tap is not even necessary for a diagnosis in many cases and although it has been done numerous times without a problem, for me, it was a very invasive procedure that I did not need so I skipped it.

I also hate that "ms isn't a death sentence" crap because to me the words and what I knew about it it sure sounded like one. The initial shock will wear off, I promise. Hang in there and please keep us posted.

[Scooter24]

Jules- we have finally found something we agree on , my dr did a spinal tap not to diagnose ms but rather to rule out something else, but it is not an end all diagnosis tool for MS, many people are dx w/o one.

[Jules A]

Jules- we have finally found something we agree on , my dr did a spinal tap not to diagnose ms but rather to rule out something else, but it is not an end all diagnosis tool for MS, many people are dx w/o one.

Lol wonders never cease.

Tigergal if you post general MS questions on the main board you will get more responses. Hang in there.

[twisterred]

I am so sorry to read this about your husband.

Insist that your hubby have a blood patch after the spinal.
Otherwise, the headache afterwards can the the worst ever.
I thought my head was going to explode and swore I would always warn people have the blood patch.

The good thing is that is solidified my diagnosis.
I think it has been helpful in my medical records over the past 20+ years.

http://www.medicinenet.com/spinal_headaches/article.htm

A diagnosis like MS is a chance for a couple to come together. There are definite stages of grief, together, you and he will make it.

Education, patience, looking at the bright side, planning, honesty and flexibility are tools that are critical in any marriage. They are especially critical in a marriage with any disease.

DH and I have made it work. Plans have changed, we have learned to trust and be flexible, make jokes (well, we were already like that to be honest) and our marriage is as strong as ever.

To let you know, I had to insist my husband not treat me like a child in the beginning. I know it was from love, but he began speaking for me and trying to think for me without asking me.
So please treat him with love and respect, asking him how he feels or what he wants to do.
If you disagree, be respectful, especially now.
Nerves can be raw when life plans change so much.

Glad you are here and keep asking questions.

[Temagami]

Here´s what I have learned the oh so hard way, it is not worth worrying about something for which you have no control to affect the outcome. You have found yourself in this boat and it sucks big time. Your future plans/dreams are altered. Now take it slowly and stop to breathe a full breath.

The most helpful thing I did was have a conversation with a person with MS the day I heard the bad news. She put it in perspective for me and I go back to this when starting to feel overwhelmed. She said, "If you need help to put your pants on, so, you need help. It´s not a big deal." She was already dealing with worse than that and still has a positive outlook on life. She said not to abandon plans, that it is possible to find a way around the MS to fulfill goals.

So, with her confidence, here I am over the halfway mark of a course of summer studies in Spain. I imagine that over time you will grieve and at times you will have a sob session. Let the sadness work its way through you as there is no point in letting it stay "trapped" inside- it comes out one way or another. Give yourself a pat on the back for being proactive and finding this forum. Be willing to change your family diet if you think it will help your husband. Try not to grouse about changes that come from the disease and not by your husband´s choosing.
Take care,
Temagami

[Tigergal]

Jules- we have finally found something we agree on , my dr did a spinal tap not to diagnose ms but rather to rule out something else, but it is not an end all diagnosis tool for MS, many people are dx w/o one.

What else was your dr trying to rule out by doing the spinal tap?

[theneighborlady]

Depend on him for your hardship, he will need you too!

Take it from my experience. If you feel like collapsing on the floor tell him. He may be the strong one right now that can scoop you up. He may be the feeling the same and it brings you closer because you both have to hold on to each other to get back up. I have been dx with ms for 8 years. My husband has tried to be "strong" throughout the entire time. He didn't reach out to me. Now we are on the edge and he still will not talk to me. He's afraid of making me too stressed and causing a relapse. He has not learned much about this disease but what I have told him. I think it's denial. Your husband is still your life partner and partners keep each other informed of their hardships. They are together to hold on to each other and battle the world together. Depend on him now because he is going to need to know he can depend on you.

[DancingPhalanges]

What else was your dr trying to rule out by doing the spinal tap?

Well I cannot speak for Scooter, but my neuro wanted to rule out Lyme's disease.

[Iceskater]

First things first.... I understand where you are coming from trying to get all of the information about MS.
Do you really want to know all of the information that is out there? Every person with MS is unique... that's the beauty of the disease.
My husband has MS. He was dignosed by a MRI and a physical exam. I refused for him to have a lumbar puncture test done. Actually the test was not even brought up.
Also you need to advocate for your loved one....
Please do not let this dignosis define your life or his. MS is about living. Just enjoy the moments.