Second appointment with MS doctor
 

I went to my MS doc yesterday. She didn't offer to take her dignosis back so I guess I have to keep it. :(

We talked about my medications and how they are working. So far everything looks good. She added medication to help me with my lack of energy. I could sleep all day and was glad to hear there is a medication I might be able to tolerate.

She checked my reflexes and asked if I thought my leg was getting worse. Some days I think it is getting worse buy on other days I am not sure.

I have clonus in my right leg. Getting my reflex tested in that leg is very uncomfortable. Last time my left leg was over reactive but this time it hardly responded.

As the weather gets warmer I am starting to feel more sluggish. I LOVE the warm humid air but it really takes a lot out of me.

My eye is getting better! YEAH! I can live with a goofy leg, but I would rather have both eyes working.

I go back in 3 months. She told me I am lucky we caught this early. My MRI's look good. My brain MRI was not normal, but the others are. :)

Any doubt that I had is gone. I have MS and that is that for now. At least I have a good chance of staying reasonably active.

I saw two people come in the office in wheel chairs. I know they had Ms because it is an MS center. I do NOT want to be them.

We took all of the kids with us and made it a short vacation since it is a 3 hour drive one way. We stayed in a motel with a pool. The kids swam and LOVED it!

We went to the zoo and really enjoyed it. It was about 59 and breezy. There were a lot of places to rest and it is a small zoo, so I had a good time too. There were bath rooms around every corner and that was a good thing too!

This morning we woke up to leave and found the window in the van had been broken out. Stupid me left my purse in the van last night. I TOTALLY forgot about it because I was so tired. :eek:

What a mess. We spent 3 hours on the phone and with the police before we could head home. The only smart thing I have done recently was taking all of our SS cards and credit cards out of my purse.

My 22 year old daughter was robbed at gun point in Novemeber and we learned what NOT to carry with you. So I only had one credit card and a debit card. However I did have two check books.

So it has been easy enough to cancel the things that were taken. The sad thing is the fool took a 75.00 purse and 25.00 wallet my sister got me for Christmas!!!!!!!!! That makes me very upset. :(

But, my doctor appointment did go well and we did have a great time before we woke up this morning. :)

LA

I'm so sorry to hear about the theft. Why is it that thieves always seem to take the things most precious to us? When my Mom passed away, my Dad gave me all her things. When I got home from my Dad's house it was very late, and after a long drive I was too tired to unpack the car. Next morning every single thing that had belonged to my Mom had gone! They took every last remnant of the things my Mom held precious! I hated the thieves for that. They robbed me of my mother's memories, and nothing can ever replace them...that hurt so much! :(

I'm glad you got a good report from your Neuro. It's always a good feeling to know that things are going well....as well as can be expected anyway :D

Try not to let it bother you that some of the clients at the clinic are in wheelchairs. Not everyone needs to use a chair. Lots of us have had MS for many years, 31yrs for me, and I've only recently started using a cane. I have some MS friends in wheelchairs, and I just wanted to assure you that the ones I know still are able to live fulfilling and happy lives, albeit with asistance now.

It is difficult when you see what MS can do. The youth minister I had when I was in high school has a very aggressive form of MS. He went from functioning ok to total care in a matter of 10 years.

The problem was they did not find the MS soon enough to treat it. I am not sure how much it would have mattered. He has many lesions in his brain and spine. He never really had any relapse.

It is a difficult situation. Difficult for me because I used to baby sit for his children and just recently his wife called to see if I would go sit with him while she went to the store. She does not know I was recently dx'd.

I was out when she called and my voice mail got the message. I never did call her back. I want too but now I wonder WHAT would I say. I will see her again some day. I think I just need more time.

But I know of several other people in my community who have MS and function just fine considering.

When you're mention "agressive MS", I'm assuming that you mean Primary Progressive MS. Unfortunately that is agressive, and as far as I'm aware, the medications that so far have been made available to us (DMDs), don't treat that classification of MS. It's not a case of not diagnosing MS early enough, it's just that research has not yet found a drug to help those afflicted with PPMS. :(

Apparently the number of lesions one has doesn't have anything to do with the severity of the disease. I've read that's it's actually location of those lesions that have more of an impact.

We recently had a thread about this, but I can't remember it's name.....sorry! Maybe other members will and so be able to provide you with a link.

It seems that people with progressive MS don't have relapses...they just keep progressing. Please correct me MSers if I'm wrong here.

Why don't you just give her a call and apologise for not getting back to her. Say you had things on and it slipped your mind....or similar.

It's up to you whether or not you disclose your own MS after you've re-established contact. Remember that while it might give you a conversation topic, it might also be a downer for you if your friends are negative when they discuss the condition. Only you can judge that as you're the one who knows them best.

Good luck in whatever you choose to do.

UGH! I'm sorry to hear about the theft. :( My hubby left a GPS in the car once at a hotel and woke up to a police officer knocking on his door. someone broke into the car and only stole the GPS. So I understand the frustration.

Don't let the worst get to ya regarding the MS. I know it's hard. :hug: My mom had a very aggressive form of MS as well - hers was PRMS, which is rare. So it's in the back of my head sometimes that I might get as bad as she did.

But I have options she didn't have as far as meds and knowledge go. Also found out that I'm stable for now and am still on the RRMS bandwagon. :Tip-Hat:


Oh and to explain PRMS - Progressive relapsing. Steady progression with flares that don't fully remit. At least, that's what I remember.

I am pretty sure PRMS is what my friend has. He went down hill very quickly. There was no point where he had a flare and recovered.

I have read too that there are no medications for this type of MS. His wife feels if they had only tried MAYBE he would not be totally disabled. It is very difficult for her. Their 4 children where still young and in school when this all started.

There were times we didn't think he was going to live. He seems to have stablized. I mean, how much worse can he get before he actually passes away?

LA

Hi LA,

Glad Y'ALL made it back safe and had a good time, but sorry to hear about the theft. Good for you for not caring all your credit cards, etc. in your purse though . . . if they got mine, I'd be spending the next month cancelling everything. :eek:


You are correct that most of the disease modifying drugs that are available to those of us with RRMS, have not proven helpful for PPMS. They think that the disease starts out as inflammatory (causing relapses), then switches to more of neurodegeration, so even those with SPMS often don't have much luck with the immune modulators.

Although PPMS generally has less inflammation (lesions), it is my observation that a lot of those in this category are often plagued with severe spinal lesions too. Spinal lesions can cause permanent damage from the get-go, rendering us quickly in the category of PPMS or PRMS.



Many lesions are transient, in that they come and go, based on inflammation. It is when they don't repair adequately, and/or depending on where they are, that likely causes us the most difficulty.



One of my closest MS friends, who recently passed away, was PPMS and confined to his bed when I got to know him. I must admit, I was very afraid to visit him at first, because I knew how disabled he was.

He is my hero and inspiration. He was one of the most amazing people I've ever had the pleasure of coming in contact with, mostly due to his attitude. He taught me a lot about how to cope (practical aspects), acceptance, and keeping things in perspective . . . with a sense of humor.

So . . . depending on what kind of guy he is, it might be the best visit you ever have with a MS-comrade, LA.

Cherie