Monday, 7 December 2009

"Open & Honest"

Hey look at this, two posts in as many days!!!
I want to ask for some advice. I probably already know the answer, but it doesn't hurt to ask anyway!
I am really struggling with a strange sensation all over my body. It feels like all my nerve endings are flickering. It is so hard to explain, but it feels to me like I have put my hand in an electric socket and all the nerves have gone haywire.
It is a sensation that I have had on the odd occasion over the years, but generally it would go away once I went to sleep and I would only feel it on the odd night. At the moment though, I seem to be feeling it night after night. I thought, a couple of weeks ago, that it might be subsiding, as it was getting less frequent but now it is doing it almost every night again.
I went to my GP, but she said she didn't really know where to go with it now. I have been quite unlucky with the pattern my MS has gone. I have experienced pain right from the start and it has been really hard to manage. My GP admits that I probably know more about the condition than she does! So she advised me to go back to my MS team, the MS nurses etc, and see what they suggest. My concern, is, that I told one of the nurses about this flickering of my nerves, last time I went to have my Tysabri infusion. But because it was starting to subside, the nurse said that it should just go away now. I was a little downhearted because I was afraid it may return and it has, so now what do I do?
I know that I really need to phone one of the MS nurses, but I guess I know that they will say that there isn't much they can do or suggest, so, I'm thinking, what is the point of bothering them? I don't like making a nuisance of myself either.
I'm also struggling with a couple of other symptoms at the moment. Fatigue is hitting me quite hard but also, I am having trouble with my water works.
This is quite hard to talk about and it feels weird to be talking about it on my blog, but when I set out to do this blog, I said I would be open and honest. Unfortunately bladder problems can be a big issue for people with MS, so I'm not going to pretend mine don't exist.
The problems I am having, are, that I need to go much more frequently and when I need to go, that usually means right then. I haven't had any proper accidents, but there have been some near misses! It also doesn't feel as though I am emptying my bladder fully, when I do go.
I have been tested for infection but it has come back all clear, so I believe that this is being caused by the MS.
When I spoke to my GP, she said, that if the results were that there was no infection, then she would look at getting an ultra sound done, so that they can see if I am emptying my bladder or not. If not, she said there were things that could be done, but that we would cross that bridge when and if we come to it!
When I put these things together, I do wonder whether it equals a relapse, but I don't even want to go down that road!!
Am I burying my head in the sand.............maybe, but I never know when things are different and I need to tell someone or when things are just due to a change in the weather or something like that!
When you have symptoms, like pain, day in and day out, I believe that it impairs your judgement after a while.

On a lighter note, I had to post this photo, it had me in stitches!
It is of Kit Kat, our little baby girl. She had jumped into an empty box that I had put on top of our stove, and she looked really cute, so I decided to take a photo. I got a couple of her lying in the box, but then she sat up and just as I was taking the photo, she yawned - priceless eh?!!



  1. Dear Amelia,

    Even you don't fell like it, you must call your MS nurse. Even if they can't help right away (most of the time they can and they'll do gladly.),they need to know what's going on in your body. You're not a nuisance to them, you a person they are taking care of. If it's a new symptom or something that seems to get worst for most than 48 hours they need to know.And for the bladder problems there's some meds for that. My sister is taking some and I might have to do so myself pretty soon. I thought I was the only one who was convinced that it was an infection and the test came back clean! After 3 different times, the doctor at the clinic told me "don't you think it could be related to your disease?". D'oh!

  2. Amelia,
    It is so hard to say if it is a relapse or just the progression of the MS. The way I am reading it, it sounds like this pain is not a new sensation. It just has become more severe? With you just starting the Tysabri it is so hard to say. Can it be a reaction to that or is it a relapse. What does your Neurologist say? As for the bladder issue, you are not alone. I have dealt with that for a few years now. Sometimes worse then others. I know it seems embaressing, but it is part of this disease. Mine comes in waves. So when I first start having that issue I use a pad and if it progresses then sometimes I have to use a depends. It is very embaressing and aggrevating. It doesn't seem fair that we should have to deal with these kinds of issues but we do. In my opinion I would call my Neuro and let him/her know what is going on and see what he/she says. I also would look into what are "normal" reactions to the Tysabri and see if the pains you are feeling are being intensified by that. I hope not due to the fact that I may have to be put on Tysabri soon too. I feel so bad for you and my heart goes out to you. I know that when you are in pain day in and day out you get so depressed, aggrevated, tired, and whatever other emotions that you just get worn out and it plays on your emotions. I feel your pain. I just went through that and I hope the Doctor can give you some advice or help. Please keep us informed and know that I am always here for you.

  3. Well, it is important to see your Specialist whenever you have new symptoms, especially if you are on a treatment. What if the Tysabri isn't working and you need to modify treatment? If you are having a relapse, you need to catch it quick to prevent permanent damage! You don't want these things to be forever if you can avoid it! Over here in the U.S., our urologist have a little doppler that they use to see if your bladder is empty ,right after you urinate. It is handy... also, sometimes if you continually, hold it, when you gotta go, you have fantom sensation after you empty. Might be nothing but you should always get it checked! The important thing is to get things before they get worse or permanent! I personally, let things go for 8 months thinking it was progression, when it was the Copaxone! Off that now and the severity of the symptoms has backed off slightly.... I am still very sick, but we have now started Solu-medrol infusions, and I am going on LDN this week, then we are going to try to get insurance to pay for I.V.I.G. After all that we will see if I am strong enough to go back on one of the DMD. I will be praying that you get to feeling better, and I hope you get everything worked out! please take care and i will be thinking of you! xox
    Audra Lynn

  4. Hi Amelia,

    I have had 41 Tysabri infusion so far. Have you considered the occasional "nerve ending sensations" as being your nerves trying to heal themselves (a.k.a. remyelination)?

    Also, with regard to your "urgency" problems, I am not a doctor but it appears to me that your bladder is spasming, which is why you feel the need to urinate almost immediately. You might think about purchasing some adult "Depends" to give you a more relaxed & safe feeling from having any accidents (I wear the man died for protection).

    I have not read your entire blog, but if the "nerve endings sensations" continue to give you problems & pain, you might want to consider discussing this with your neurologist and perhaps he/she might want to prescribe Neurontin/gabapentin or Notriptilyne to aid in dulling those sensations. I take Notriptilyne for that reason.

    In any event, I hope you start to feel better soon, and the pictures/photos of your babies (kitty cats) are just precious!

    Take care dearheart, Lauren :)

  5. Oops, I am using a program that types for me as a dictate. I noticed that it typed "..., a man died..." when it should have read "I wear them at night for protection". (Heehee)

    Sorry about that. Lauren

  6. Hi! Amelia I know it can feel funny to talk about certain things. I use to be like that only now I think it's better to talk about it. I did learn a good tip from Anne at Disabled Not Dead. She suggests and I do it: While sitting on the toilet lift your self up off the seat on one side and continue trying to empty your bladder then do it on the other side. It really does help empty you out and you will be able to last longer between trips to the bathroom.

    Take Care of Yourself

  7. Hi Amelia,
    Please come by and pick up your blog award.