Follow up appointment with Dr. Masood

My visit with the neurologist, Dr. Masood, yesterday went well.  First he went over the results from my neurological testing that I had done with Dr. Morgan.  He said my memory is not much far off from other 32 year old females have measured at.  He said when they did the testing they can tell that I am find it hard to think of words to say sometimes.  I find this to be the biggest hurdle lately.  I can look at an appliance in the kitchen, I can tell you that you that it gets very hot and you put things in it to cook or bake, but sometimes I find it hard to come up with the word that it is called. . .

Oven! 

He said I also have some troubles with my left hand, but that comes with having MS.  Since I am right handed I can expect my left to not work as well, but in patients with MS it can be even harder for them.

Dr. Masood told me that this is nothing that he is worried about and I therefore, should not be worried about it either.  He said it is not to the point where he thinks he has to treat me for any memory issues, but it is nice now that we have this base line in case we have to do this test in the future.  I thought to myself, you are out of your mind if you think I am doing that terrible test again!  I would only go through that again if it was absolutely necessary.

I have had several people; doctors, family and friends, as me if I am depressed.  I told Dr. Masood that I feel good, I am not down, I am active and I don’t feel depressed.  I asked him if there is any way that I could be “Depressed” clinically, but still feel OK.  He drew me a diagram and explained to me how depression works in MS patients.  This is the best part of Dr. Masood is that he is always drawing me pictures so that I can better understand.  He showed me a brain with four lesions, two on each side.  He said let’s say this is your brain and this is the number of lesions you have.  Your brain has all the rest of this space to compensate for those 4 lesions.  Then he drew several more dots showing a person who has lots of lesions.  He said these is so much scarring in the brain with this many that your brain is not able to compensate and that is why some people with MS would need to go on medication for their depression.  He said my MRI looked more like the first brain he drew with just a few lesions.  He said I am doing very well for a person with MS.  He said if I was depressed I would not be getting up for work every morning, eating well, exercising, doing activities that make life enjoyable; all of which I am currently doing.  He reminded me that I need to stay active.  He said MS reacts to people that sit on the couch or in bed all day long and are not active.  He said as long as I am staying healthy and active and on my current treatment I can keep MS at bay.

Dr. Masood then pulled up the results from the MRI that I had and he said there is minimal changes in the plaques on my brain from the initial MRI that they did back in 2009 which led to my initial diagnosis.  He said that is great news and he is happy with the current treatment that I am on, Copaxone.  Then came the sad face and he asked me, “This is good news!  What is wrong?”  I whined and said so that means I have to keep doing these damn shots every night?  He said things could be a lot worse.  Some diabetics have to give themselves 4 shots a day!  He said there is a pill currently out, Gilenya that is being used as a treatment for MS.  However, insurance will not cover this pill unless the patient has already tried the injections and they have failed to work.  He said he is happy with how the Copaxone is working for me and he wants me to continue on that.  “OK. . .”  I said reluctantly.

He is sending me out for blood work to make sure my liver is still in good condition and then wants to see me back every year.

I am thankful that I have been able to keep my MS in check and not let it consume my life.  It is undoubtedly something that is always in the back of my head, but I am able to not let it take over and consume my everyday living.  Now if this summer would just cool down a little bit so I can take my kids outside to play!!!

Ways to help. . .

I have had a lot of people ask me what they could do to help since I received my MS diagnosis.  I feel very fortunate that I have not had to depend on a lot of help so far.  I am sure down the road this will change, but I am not worrying about that now! 

I have become "Friends" with a woman on facebook who runs a page titled "Positive Living with MS" and it is a place where she can give us uplifting messages or we can get advice from other people that have MS.  Recently she posted this and I am so glad that she put into words some of the things that I was thinking.

Here is the post. . .

Ways to Help a Friend with Multiple Sclerosis

by Positive Living with MS on Wednesday, July 11, 2012 at 7:22pm ·

1. Don’t forget they are sick! Get well cards and gifts dry up pretty quickly when you have Multiple Sclerosis, but you don’t get better and unless a hospital stay is needed, it’s easy for everyone to forget that their friend is still ill. If you know that someone with MS is dealing with a flare up or is depressed or just because, send them a card or a gift – it’s doesn’t have to be much! Just the thought will make their day.
2. It’s likely that they will be unwilling to ask for help, but will still need it. If you want to help out, try not to ask “What can I do?” which either invites the answer “oh nothing” or means thought is needed. Instead, think of something you would be prepared to do and ask “Is it okay if I do ______ for you?”.
3. Be easy going guests if you go visit. Don’t expect entertainment, but also be prepared to do things if wanted. Knowing that a guest isn’t bothered whether we go out for the day (it can be nice to take advantage of having someone there to go places you wouldn’t go alone) or whether they read a book or do the housework is fantastic. It takes the stress away.
4. If the person with Multiple Sclerosis has a baby, children or even a dog, ask if they would like a break sometimes. You may not even have to take the children/dog out – just having someone prepared to come round and look after them can mean a decent nap or a long bath can be taken.
5. If you live locally, easy meals in Tupperware containers dropped off at the house can be a lifesaver…especially if you don’t need the container straight away so it can be frozen. Just make sure you know what they can and cannot eat beforehand! 
6. Be flexible and never make them feel guilty about things they cannot do. Multiple Sclerosis does not give schedules of flare ups or unexpected issues. We do not know in advance how we will be feeling.
7. Ask, “Do you have an errand I can run for you before coming over?”
8. "No matter how little you have, you can always give some of it away.” ~Catherine Marshall. Just listen... until it hurts to not say anything. And then listen some more. People with MS usually have a lot to get off their chests and often feel they can’t burden the people around them. Let them know they can talk to you and you’ll listen.
9. Understand that they live in a constant state of making decisions for which there is no guarantee they are making the right choice.
10. Educate yourself. Look up Multiple Sclerosis online and if they are having new treatments, try to learn a little about them. It helps to not have to explain every little thing and may well make you understand a lot better. Just remember that not everything you read will be true, unbiased and completely up-to-date and that by the time you have a firm diagnosis, many MS people are experts in their own condition. Don’t use your knowledge to try and correct them – they may simply be more up-to-date with research than whatever you read. 
11. Don’t tell them about your brother’s niece’s cousin’s best friend who tried a cure for the same illness and... (you know the rest).
12. Don’t pester them to try something you read or heard about and think might help. If you really think it might help, send them a newspaper clipping or email them the article and leave it to them to decide whether to follow it up or not. 
13. Simple acts of kindness like holding the door open (they can be very heavy!) are lovely.
14. Never say “maybe you’re not that sick after all”, “it can’t hurt that much”, “you just have a low pain threshold” or minimise or trivialise the symptoms in any way.  if we are showing pain, then it’s almost certainly a LOT of pain, not us making a fuss over nothing.
15. Temporary illnesses and injuries can help you to understand what a person with Multiple Sclerosis goes through, but it is never the same. We have symptoms that never ever go away and no one without MS can ever truly understand that. Be careful with simple throw-away phrases like “I know just what you mean” – you probably don’t! If you truly think you get tired or hurt like we do, then there must be something wrong with you! 
16. See if there is any way you can enable them to do a loved hobby that their illness restricts. They may be an enthusiastic gardener who can’t dig or move a wheelbarrow or they may be a seamstress who can’t cut a straight line anymore. If by simple acts you can enable them to continue doing something they love, do it! It’ll be better than any gift. 
17. Never assume they cannot do something without asking. It may be that it is something they can do on a good day and would like to, or that for them it is worth having to spend days resting before and afterwards.
18. Don’t not invite them to things because you don’t think they’ll be able to come. Having Multiple Sclerosis is isolating enough without feeling like you’ve been forgotten about completely.
19. Buy them a gift of a favorite magazine subscription. Having Multiple Sclerosis can be truly tedious at times, especially as you may not be able to get out to get things like magazines or may not be able to afford them.
20. Ask what time of day is good for calls or visits. They may have a nap schedule they need to keep to or they may know that at certain times of day they’ll feel worse and won’t be up to polite conversation. 
21. Never tease someone about how long they spend in the bathroom…don’t even mention it. If they’re taking a long time or going frequently, it’s because they need to!
22. If they have to stop work or receive disability benefits never say “well, aren’t you lucky. I’d love to sit on the sofa all day and get money for it”. Most people with Multiple Sclerosis would dearly love to be able to work and be independent… and sitting on the sofa soon gets very frustrating if that’s really all you can do.
23. If your friend misses a special event in your life, don’t be grumpy about it. Call and ask if you can bring some photos over and tell them all about it. Let them know that they are still a special person to them and you want them to be part of your life even if they couldn’t be there on the day.
24. If you’re coming for a visit or even just to go out somewhere, call and check it’s still okay before you leave.
25. Recognise that pain and extreme tiredness can make anyone irritable (have you never snapped at someone when you’re sick with flu?) and that various medications can affect behaviour. If your friend does or says something rude or hurtful, give them the benefit of the doubt. They may well be horrified afterwards.
26. If they need to cry, let them and just be there for them. Never say “don’t cry” or “this isn’t worth crying about”… it obviously is to them!

So if you were every wondering what you could do with someone who has MS or really has any debilitating disease now you know. 

Brain appointment results

I heard back from Dr. Morgan, he is the one that did the neurological assessment testing a few weeks ago.  I won’t see my neurologist until the middle of July so I asked him to call me when the results of the test were in so I could see how I did and would have to wait so long until my next appointment.  Well, good news!!  He said that my test scores compared with other people in my age group were not much different.  He said that I have some mild memory loss, but nothing that he would be concerned about.  He told me that after speaking with me and then going through the tests he can see that I have came up with some great coping skills to help me with my day to day life.  He encouraged me that I have a very busy life and some of this could be due to that. 


I asked him about that MMI test, just because some of the questions were a little odd.  He said that came back normal as well.  He said that was testing to see if I had any other underlying issues going on like depression or any other mental concerns.  That is one thing that could factor into my memory loss.  He assured me that everything looked great and that if I had any other questions come up in the meantime I could address those with my neurologist at my appointment in July.

A part of me is wondering if this is all in my head then.  How could it be though when my husband agrees that my memory is not what it used to be?  Maybe I don’t need all the answers though.  I am doing a great job at work, my family is healthy and happy so I think I just need to live life and roll with the punches that come along the way.



 

I have a few lingering questions for my neurologist that I will ask him at my next appointment, but I will put those on paper so I don’t forget  and move on from this.  I have my post-it’s handy and my husband doesn’t mind hearing the same stories from me over and over.