Friends that know more than your Neuro
Do you also have those kind of friends?
They know more than your Neuro, they know why you´re suffering from Fatigue. It´s because you “think you are tired”… Damn, why didn´t I think about that? My so called friend said that I should just imagine that I am “wide awake” and the fatigue would just fade away.
I´m sorry, what do you know about MS? A few month ago I had to tell you what MS stands for, and now you come and tell me what MS related fatigue is and how I can overcome it? I´m sorry, but no, I don´t think so.
These are the pills that I take in one week (and on this photo 6 are still missing)
Wanna know what they are, so you get an idea what it means having MS?
First the non-MS-related Pills:
-Beta Blocker (for my Migraine)
-Spasmex (so I can pee)
-Topamax (so my muscles stop twitching)
Vitamin Pills I take because of MS (To feel a little bit better):
-Vitamin D (because MS took all I had)
-Vitamin B´s (helps with Fatigue & supports nerves)
-Biotin (to help my hair & nails that are damaged from steroids)
-Vitamin E (My “switch-supplement”,I switch between several Vitamins/Minerals each week. This weeks it´s Vit.E.)
I also take Magnesium since several years to prevent migraine attacks. It works!!! If I stop taking it, the attacks come back more frequently.
Biotin: I take 1 pill a day, for 60 days (1 package) then I make a break for 1 or two month. Just because I don´t want to overdo it with the Vitamins/Minerals.
After my Steroid treatments I suffered from hair loss and thin nails. It hasn´t recovered fully still, my nails are still not the same again and my hair is still very thin. And to be honest, Biotin doesn´t do anything at all…
Disclaimer 1: Vitamin E isn´t good if you take it for too long. I read it isn´t good for the heart, so I only take it for one week every couple of week. It has benefits for the health as well, especially for the energy level (which tends to be very low in MS)
Disclaimer 2: The “switch-supplements” I talked about are: Vitamin E, Iron (that I take for 1 week when I´m on my period), Calcium (for muscle twitching), Vitamin C (especially in winter month)
I take one of those supplements for one week, then I take the other supplements.
Disclaimer 3: Wouldn´t a healthy diet be better instead of supplements?
Yes, of course! No question! But I can´t cook for that long, because I can´t stand for that long or I am just simply too tired or I just don´t have enough energy too cook. So instead of doing nothing, I can at least try to get some vitamins that way.
Stairs are haunting me
Even a few month before my MS onset I started fearing stairs. Of course I had no idea why and I thought I became crazy, but walking the stairs frightened me.
When my MS onset happened and I got the big inflammation in my spinal cord, it all became worse.
There were times were I was only able to go down the stairs when I sat on my butt and took one stair at a time.
Now I can somehow walk down the stairs, but I have to lean on the handrail with my whole upper body and touch the opposite wall with my other hand.
At home we´ve installed a second hand rail, so I can hold on to them on both sides.
But when I´m in public and there are wide stairswaywhere I can´t reach the opposite wall, then I have a big problem… My knees start to shake. Not in fear, but my brain somehow thinks that this is an unscalable obstacle. It´s like standing on the edge of a cliff. You don´t just jump!!!
Walking up the stairs is manageable somehow. Slowly but do-able. But walking down the stairs is terrible, just awful! I feel as if I´m falling forward and I have problems placing my stairs on the next step. Sometimes my ankle cramps and makes it even more difficult…
It´s not a fear of hights, it´s somehow just not manageable for my brain and nerves to coordinate my steps easily.
It is so bad that many nights I wake up screaming in the dark with complete loss of coordination and racing heart, because I dreamed about falling down the stairs.
10 month after the MS onset / October 2012 / MS Update
I know I haven´t written on her in a while, so I thought it´s time for a long needed update!
I´m going to inject my 36th shot of Avonex tomorrow… 36!!!! Damn, that´s a long time, many injections…
36 weeks ago I couldn´t imagine that it would become “normal” for me to inject myself weekly, but it did! It´s a normal process, nothing special anymore. Every saturday night I take my Avonex stuff out, desinfect my hands and thigh, load the pen and give myself the injection. Afterwards I continue living my life like nothing has happened. It´s strange somehow.
I take a 24h painkiller 30 minutes before the injection. It´s called “Arcoxia”, my Neuro gives it to me and it helps alot! No side effects AT ALL!!!
The only side effect, if you wanna call it that, is that my legs become bumpy. Especially my right thigh (my right leg is my bad leg). There I have lots of bumps and shrinking muscles beneath growing muscles who take extra shifts
To be honest, my right leg looks as if I´ve been in a car crash and everything grew back wrong together. But I don´t really care about that. Honestly I sometimes think that this is at least something “visible” that others can see!
MS is invisible. You feel crappy on the inside but look fine on the outside. It might sound stupid, but at least I have my leg to proof that something really IS wrong with me…
Walking isn´t easy, walking is hard and not taken for granted anymore. I feel blessed that I can still walk from A to B. I can walk for like 15 minutes without huge complications. But after that my right foot becomes numb and heavy and stiff. If I still continue walking then, the numbness climbs up my leg and hits both knees. Then walking becomes complicated, but I still COULD walk then.
Whenever I walk I can only do it slowly. One step at a time. My right leg and foot turn outwardly. I have bad balance and coordination, so I look drunk when I walk. People look curious when they see me walk. I hate that kind of attention…
The Tremor was almost gone during the summer month. Only sometimes my hands and arms are shacky, but alot less than it was.
I sometimes suffer from real bad Fatigue. I´m so tired some days that I have no energy at all and all I wanna do is sleep. The days after my Avonex shot are better, but the closer the next injection day comes, the worse it gets.
Some nights my feet feel hot and swollen, but they aren´t. It keeps me from sleeping and is really annoying. I haven´t found anything that helps. The Neuro says that my nerves are going crazy and are sending out wrong signals and that there´s nothing I can do about it
On bad days my sight gets blurry and I have a hard time concentrating. These are the days where I walk worse and am very tired. I learned that I need to rest then, otherwise it becomes even worse.
I haven´t adapted my MS in my life completly yet. I still can´t believe it sometimes and it still bothers me that I can´t do what I did before the onset.
I pay a woman to sweep my floor and vacuum my home 6 hours a month. I am in the process of becoming “officialy disabled” so that I wont have to pay for my physio and ergo therapy anymore. Beeing “officialy disabled” isn´t what I wanted to be when I´m in my 30s… But that´s the way it is unfortionatly…
I am still able to see the good stuff in life. I enjoy reading and spending time with my family, cuddeling with my dog on the sofa and visiting friends. I try not to focus on my MS but still adapt it into my life. Ignoring the MS isn´t a solution. I try to be happy and positive. I´m glad that I haven´t had a relapse again yet. I´m happy that I can still walk, even if I limp. I enjoy my life still, even with the Monster MS!
My Neurologist got my blood checked and discovered that I have like no vitamin D at all!
He said it´s like as if you have never seen the sun and never ate fish before.
My Neurologist said that people from the north pole and people from africa almost never have MS, which leads to their high vitamin D household. At the north pole they eat mostly fish and in africa they have the sun alot and spend more time outside like we do.
A lack of vitamin D is often found in people with MS.
So now I will have to do a power-cure with vitamin D pills for a month. After that I will have to take the normal dose of vitamin d for some more month, and in 3 month we get my level checked again.
Update MS Diary / June 2012 / Bowel Problems
Since my onset I am having problems with my bowel.
I can´t like I used to.
My worst was not beeing able to **** for 12 days! That was horrible. Constipation is awfull!
Since I still suffer from constipation, no matter what I eat or do, my Neurologist suggested that I take some pills, 3 times a day, to help the bowel muscles and strengthen them.
Unfortionatly I also have to take these bladder-relaxation-pills, which do the opposite of what the bowel-pills will do.
Pill, pills, pills and some more pills…
Update MS Diary / June 2012 / Pee & Bladder
Yesterday I´ve had my appointment at the Urologist.
I had to come with a full bladder and pee on a special toilett. He also wanted to see my pee chart that I wrote for one week.
My results from the “special toilett” were fine, so he said that I have no problem with my pelvic base, so this is not the reason why I have leftover urin in my bladder. He said that it has to be something with the nerves, that the bladder tells the brain that it´s done, before it´s really done. My Urologist said that this is a very common problem in MS. And it´s dangerous, because the bladder can´t “desinfect” itself when it´s not completly empty. That way bacteria builds up and causes infections in the bladder and kidneys. My urin showed some of these bacterias allready.
So he gave me pills that I have to take at morning and night. They relax the bladder muscles, so that it can empty itself more easily.
We´re going to try this and in 30 days I have to come back and they test my urin again.
Wonderful, I desperatly needed another pill!
Update MS Diary / April 2012 / Brain is Lesion free
Yesterday I´ve been to my neurologist to finally discuss my MRI scans.
He looked at them for about 10 minutes, and then he finally said the words that I wanted to hear: “Seems like your brain is free from lesions or plaques at this moment!”
Damn, I was so relieved, I almost cried!
He said everything with my brain is fine, and that the reason for this probably is that we started the Interferon therapy so early.
I asked him:”But are you still sure that I have MS? Couldn´t it be Transverse Myelitis, or something like that?”
He shook his head and said:”You will have to accept the diagnose Multiple Sclerosis. We made tons of tests, at the hospital and here as well. You have two lesions in your spinal cord, you got a relapse after your onset in about 6 to 8 weeks. That is not common in Transverse Myelitis, and all the other neurological diseases that could do this, are excluded.”
I asked some further. “But don´t I need at least one more lesion in the brain to say that I have MS?”
He answered:”No. In the past it was like this, indeed. But now we´re saying that if your immunsystem attacks your central nervous system, and your lumbal puncture results come back positive. You have all the symptoms for MS. Just accept it and don´t try to talk yourself out of this anymore.”
Damn, he was right. That is what I was trying to do, to talk myself out of MS.
Also Avonex works for me. I haven´t had a relapse since I´m taking it. I feel better and Avonex gives me my energy back. My Neuro said that Avonex wouldn´t help me at all, if I didn´t have MS…
My Neuro is specialised on MS. He said that in the past they wouldn´t have treated me with Avonex if I wouldn´t have lesions in my brain. But many tests and expirience showed that people who have lesions in the spinal chord tend to have a relapse, if not treated with Interferon. And they don´t want to wait for a lesion in the brain these days to start the Interferon therapy, because another lesion would mean more disability.
By the way, I am from germany.
I´ve heared from many people from the USA, UK or Canada that have several lesions in the spinal chord, but none in the brain, and they aren´t treated with Interferon. Doctors even say that they don´t have MS at all!
My doctor doesn´t agree with that. He said that this is recless and dangerous, because he has seen many patients in the past who were treated like this and got another relapse that left them disabled.
This is why he treats me with Interferon NOW, before it´s too late! He wants to keep my disability as low as possible! And I want that, too!
Update on MS Diary / May 31, 2012
It starts with an appointment at the Urologist.
He wants to see my pee-chart that I did for a whole week and he wants me to come with a very full bladder and pee on his “special toilett”. That´s at 9am. We have to drive 45 minutes to that Urologist, so I might be not home before 11am.
At 2pm I have physio therapy, and finally at 5pm I have my Neurologist appointment, where we discuss my latest MRI scans.
I am so nervous. I don´t want to have any lesions in my brain, my lesions and plaques in my spinal cord are enough for me. I don´t want to have something in my brain, I want my brain to remain untouched by this monster called MS!!!!!
f1r3bug asked: I was just diagnosed with MS this last wee (well final diagnosis, we knew what it was for quite a bit now) and was started on high level steriods and this coming week will be learning how to do Rebif injections. I was so happy to stumble upon your blog and your honesty and open ness is very refreshing. Just wanted to say thank you!!!
You´re very welcome! That was the reason why I started this blog! :)
Sorry to hear that you got diagnosed with MS. It sucks, to be honest. But you´ll learn to live with it, as silly as it might sound for you now. And life is still beautiful, even with MS :)
I hope everything goes well with you! Take care!
Anonymous asked: Do you ever regret being so open about ms
In real life or on the internet?
Well, no, I don´t regret it. In real life it helps alot when people know that I have MS. It also cuts down the rumors that I´m drunk (because of my walking and such)
On the Internet I have met alot of people who expirienced the same like I did. It helps alot to talk about it and how the symptoms feel for us, what brings relief, how to deal with stuff and so on.
So overall it has helped me alot to be so open about MS.
the-raven-nevermore asked: I Stefanie I was recently diagnosed with MS on 05OCT12 and I will be starting the Avonex Pen this week. Do you have any tips or anything about shot? Or even your experience on it?
I´m so sorry to hear that you got diagnosed with MS. (((hugs)))
I remember how shocked and desperate I was when I got diagnosed in 12/2011. It´s a life changing expirience and I wish you good luck and strength and patients. It´s not the end of the world, but it´s life changing…
I have been taking Avonex since 35 weeks now and I really think that it does help me! I inject myself every saturday and it makes me feel alot better for about 4 to 5 days! After that I feel that I need my injection again, because I get a bit weaker and more tired. Since using Avonex I haven´t had another flare up, which is awesome!!
I´m going to sum up my expirience for you now and I really hope it´s helpful :)
- I inject myself at 8pm, so if side effects would come, I can go to bed directly and just “sleep them away”
- I take my Avonex pen out of the fridge at 10am at the injection day. Some say that a fridge-cold pen makes the side effects worse. So I take mine out 10hours before the injection, that way it has room temperature.
- I either take Ibuprofen 30 min before the shot and again 2-3 hours after the shot before I go to bed. That way I keep the side effects at bay.
- I make sure that the desinfection dries on my skin before I start the shot. I expirienced that the desinfection liquid can burn alot when still wet.
- I try to relax my leg muscles as much as possible when injecting. When injecting in a tight muscle it can hurt. So I cross my legs or put something under my knee before injecting.
- Relax after the shot! Especially after your first shots. Relax, eat some ice cream, watch a good movie, or something like that. I find that relaxing helps and keeps the side effects at bay. When I have to do something after my injection, I get tired easily and feel weak.
When I do all this, I don´t feel any side effects anymore. My first side effects in the beginning were flu like symptoms with fever. I took more Ibuprofen and that fixed the problem.
If you have more questions, please feel free to ask! I´m happy to answer and help :)
I wish you all the best and hope that Avonex will prevent flare ups or you as well!!!!