Decisions and Updates

Last post I did, we were waiting for Hubby's primary neurologist to read the MRI. They called and let us know that Dr. Price read it and was not nearly as concerned as the one that originally read the scan. He said that all of the new spots, yes there are new spots are ones that he knew was coming. When he was originally diagnosed, the symptoms he was experiencing were new enough that they didn't scar over yet and were not on the original MRI. He knew that as Hubby recovered from the attack, it would scar over and those are the new ones we are seeing now. The scarring on the optic nerve is pretty severe they said but it was what lead to the diagnosis. 

Dr. Price let us know that he doesn't want to do the steroids. He wants to see how Hubby's body will react to the current attack and whether of not his body will recover on its own. Quite a swing from the first one that read it! He will go in for an actual appt and get checked out so we are waiting until next month but he does have to go in. They are considering another MRI in March to see if the new round is showing yet.

He has had his fair share of changes but nothing that is affecting his quality of life or his work. That we are really thankful for. 

People keep saying "you look good!" Like he should be looking like he's sick. I told him he should respond with "maybe but you should see my brain!" He laughed but said that wasn't nice. 

MS is a disease that no one can see. It will or will not progress and for quite a while people with MS start sharing their "words of wisdom." Everyone wants to know how he's doing and he gets it, BUT anything more than that, opinions, pushes, criticizing his decisions etc are unwelcomed. Sure everyone wants to help but nothing has been setting him off more lately that people asking stupid questions. If you are one of those people, please understand that he is his own person. He has to do what's best for him and work with his Neurologist to take care of himself.

We have faith......can you? 

MRI came through

After the waiting game, I got antsy and called the neurology office. Let me back track a second.......they called hubby to schedule the MRI and he couldn't remember what they said the next step was. It was like we were sitting ducks so I took the bull by the horns and called yesterday. Dr's nurse Deb has gotten to know me quite well (good or bad? Am I a helicopter wife?) and called me back. She let me know that there was a change on the MRI and they wanted to do the steroid infusion. It is the treatment for an attack and basically knocks all of the inflammation down. Hubby would have to go in 3 days in a row and be hooked up to an IV bag. Since she knows he travels for work she asked me when he would be home. I told her she had to call him to schedule because he's home right now but I know he's scheduled to leave Monday morning. She made it sound pretty urgent and it freaked me out a bit but being that I was at work I couldn't talk much. I got home and Hubby said she called him and explained everything so here is what we know for right now. 

It was not his primary neurologist that read his MRI. Hubby decided that he wants Dr. Price to read it before any decisions are made since he knows his case and knows him. I more than support this decision. He was told that there is a change in his scans and that they want to do the IV right away to knock the attack out and that the major change is on the optic nerve. He decided he is going to hold off on the IV until Dr. Price reads it. He originally told me he doesn't want to do the IV but I learned it's not for the right reasons. Major illnesses lead to a major financial commitment for the rest of your life and he told me he doesn't want to pay for it. I will be honest, when he said it I kind of snapped. I raised my voice in frustration and then apologized for yelling. I was so upset to hear him still worry about money. It's not about the money. If there is something that can help him and help his quality of life then I refuse to worry about the money. We will make it work we always do. He heard me out and told me he didn't know I felt so passionately about it and if Dr. Price reads the scans and wants him to still do the IV infusion then he will. Part of the hold up for him is he sees it as a bandaid. In his head, why go through it when he could have another attack in a few months anyway? I keep trying to point out that we don't know if this is from him having the flu in December or if this is the direction his MS will go. 

Ultimately this is part of life and we don't hold it against anyone. He could have gotten the flu from anyone and we will have to ask the doctor if this is the norm or if this is from him getting a virus. We may never know actually.

So, we now wait.....again. We wait for Doctor Price to read his scans and tell us what HE sees and thinks. We go from there. 

Hubby talked to his Mom yesterday after he found out that there are changes and she wants him to see a different doctor. See someone that wants radical and aggressive treatments. Hubby said no. He wants to have faith. He knows he will always have MS and the point of medicine and treatments are to give him a quality of life. We need to see if the Copaxone is working and this could be a bit of a set back because it doesn't give the full picture for right now. 

The unknown has become a part of life and we are working to move through day by day. Knowing that we have the marriage we do makes the world go round. Could we end up with some major life changes? Yes, but anyone can. We have talked about the fact that it's possible he will never have any physical disabilities and it's possible that he will. It's possible that there will be a day that he won't be able to work his physical job anymore and I will have to support us. This being in the back of my head as an option is a huge part of my driving force for my career right now. Getting out there now to prove myself and get my foot in the door now is going well with his support. To benefit us in the long run. I have also said a few times lately that if I need to give it up I will. I guess we will see what direction life takes us. No matter what, day by day is our plan. 

I will let everyone know what Doctor Price says but it will more than likely not be until early next week. 

Hang tight and I will post when I can. Happy Friday everyone :) 

No appt....straight to an MRI

I broke down and called the neurologist about Hubby's symptoms. At first they were concerned and wanted to see him....to the point that the nurse was going to double book the doctor to ensure he could get in. When Hubby called to schedule they told him that the doc read the symptoms and decided he needs an MRI right away to see what's going on. Ultimately it's a good thing because then the Doc can evaluate but it's nerve racking. We need to know so we are okay but the continued symptoms are making me wonder if we are going to be upgraded to something other than Relapsing Remitting MS. MRI is Tuesday morning and then we are unsure if they will schedule us to go in or if we are going to be called with results? I hate the unknown. I promise to post when we find out.

On a better note, are you registered for the MS walk in April? I started a team for him so Team Tinman will walk proudly right along with him :) let me know if you are interested! Don't forget!