New here-Experiencing Some Weakness
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March 11, 2008 at 3:39 pm
[FONT=”Comic Sans MS”][SIZE=”3″]Hello all. I’ve been reading some of the posts the last couple of days and feel like there is a lot of warmth here. I feel very lucky as my experience so far with CIDP has been “easier” than most. I don’t think it’s ever really easy but in comparison I don’t feel I have very much to complain about.
About 8 years ago, I started having troubles with tingling in my toes. That worked it’s way into numbness in my feet and what really woke me up to my problem was when I could no longer walk up a flight of stairs and I had to watch my feet when I walked cuz I wasn’t sure if they were actually moving. After a few visits to my regular doctor (an the numbness slowly working it’s way up my legs), I was lucky to get an appointment with a neurologist at UW Medical Center (Seattle). After some fun tests (not really-I hate needles and getting shocked and then having a spinal tap wasn’t really any fun), he was able to diagnose me with CIDP. I am very happy to have ended up with Dr. Krause as this all took only 2 1/2 months and I have read so many stories about people being misdiagnosed and it took years and several doctors to figure it out. Anyway, he put me on 60mg of Prednisone right away and I noticed a difference after about a month. I can’t remember how long I was on that dosage….it had to be a good 6 months or so and then we very slowly started tapering it off. I was on the pred for about 3 years or so.
So fast forward to now (i’m 33 years old). I have felt relatively good until about last summer. I felt like my legs were getting weaker. I am a very active person and a regular exerciser….for the last couple years I have been exercising at least 4 times a week. I get cranky if I go more than 3 or 4 days without some kind of exercise. My husband and I are active waterskiers. This winter I really wanted to build up some more muscle as I’m hoping to enter my first ski tournament this summer. I have been very fatigued the last year and am finding it harder to be at the gym even though I feel so good at the end of a work out. I skied last weekend for the first time this year and I only made 4 passes because I felt like my legs were going to colapse. The first thing I did when I got home was hop online to see what I could find on the “after effects” of CIDP. I’ve read stories about people who’s treatments went well but they still have days where they are tired and feel week. Is this normal? I think what caught me off guard was that my treatment went so well and I really felt better for a long time after that and then I started noticing minor symptoms. I don’t have the tingling or numbness but I just feel a little weak and tired. Waterskiing is a HUGE deal for me I think because I learned how to slalom the summer after being diagnosed. That’s when I decided that as long as I could physically ski and physically exercise, I was going to take advantage of that. Those luxeries could end some day and I want to know that I did everything I could to enjoy what I was able to do. I’ve kept a good attitude through most of it and my husband is wonderful and supportive. Again, I feel lucky and I think my body responded so well to the treatment because of early diagnoses. We got in there and got it knocked out…..well as best we could. Is this weakness something that can come and go? I think It’s time to call my doctor and go in for a re-evaluation (its been at least 3 or 4 years since I’ve seen him). Anyone else with a similar situation?Thank you for taking the time to read my story![/SIZE][/FONT]
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March 11, 2008 at 5:29 pm
You’ve been off of any treatment for 3-4 years? WOW!
Your weakness & fatigue could be a relapse of your CIDP. You really need to get back to the dr ASAP to have it checked out. CIDP can go into remission but the downside of that is that it can also come back. So staying on top of it & seeing the dr if you have ANY question about it is important.
If testing shows that you are relapsing (or your symptoms continue to progress) then you need to be put back on a medication. You’ll find that most people are on IVIG. Some people do still take steroids but I think the consensus is to avoid them, if you can, due to their long term side effects.
Can I tell you that I think it is FANTASTIC that you’ve been able to continue doing what you love to do. My 6 year old daughter has CIDP & I just told her about your water skiing. She said to tell you that’s it’s “awesome” you could still do it & now she wants to try it too.
Good luck & welcome!
Kelly -
March 11, 2008 at 7:34 pm
I didn’t realize until researching this week that most people continue to need treatment. I do feel very lucky and I contribute a lot of that to the quick diagnosis. You’re right, I do need to get back to the Dr and be re-evaluated. Sometimes I need to hear those things from other people, ya know!
I think waterskiing became my “savior” for lack of a better term. I know there could be a day that I won’t be physically able to do it so I want to enjoy it to the fullest while I still can! Some day when I can’t ski, I’ll just have to get certified to drive the boats in tournaments so I can still be involved. It’s a great sport with lots of positive people. Oh my gosh, I’m so happy to hear that you’re daughter wants to try water skiing! That warms my heart. Tell her I hope she has fun in whatever she tries.
Thank you so much for replying and for your advice, I really appreciate it! -
March 11, 2008 at 8:56 pm
Hi Lilly,
Before you go to the doc, see if you can have med. records dig up your old ncv/emg. More than likeley they will do another one. It is beneficial to have the old one for a couple of reasons, the first, so that they can test the same nerves as the first test so that the comparison is accurate. Secondly, it will give them a clear view of how much additional demylienation has occurred since the last time. three years in remission is awesome! My 11y/o can go about 4 months, so we currently get ivig every month to try and flood his system with antibodies.Just a thought, since they will probably do some blood work, ask them to check vitamin d and b-12. They both can be contributing factors in weakness along with the cidp. Good luck!
Dawn Kevies mom -
March 12, 2008 at 12:18 am
Hi Lilly, It can’t hurt to see your Dr, and if he thinks you are in a flare up, than try roids again. Thats Great that you can ski, I miss being able to do that. If you are in a flare up, than by doing the pred burst you might have the energy to enjoy your tourneys. Slap it back into remission and do a rooster tail for me!:D
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March 12, 2008 at 10:41 am
Lilly, Welcome. 🙂 I agree with everyone …… Wow on the 3 years with no problems (that is truly an awsome gift), but …..Get it back into remission asap, and go and see your doctor with whatever medical records you can dig up – imparitive that you see to this as soon as possible.
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March 12, 2008 at 2:17 pm
Lilly,
Welcome, it’s so nice to meet you.
I am glad to hear that you can still enjoy the things you love, it’s very important. I agree with what everyone has said, you should see your Neuro. right away. It may be nothing but as always with this, the earlier it is treated the better. Take care, best of luck and welcome to our family.
Jerimy
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March 12, 2008 at 2:18 pm
Thanks everyone for the responses and suggestions! I will ask for my old records to be available. I’m hoping if he wants me to have treatment again that Prednisone will be what helps me. I would love to have some of my strength back and be able to enjoy skiing again this summer. I certainly don’t take that for granted and I try to enjoy every minute of it!
Angel – the skiing smiley is too cute! I will definitely take a pass or two for you!
Dawn – I didn’t know about the vitamin D & B12 stuff until reading posts on this site. I’ll be sure to ask about that as well – thank you!
Ali – you are right, I do need to get on this and get it figured out. I think I’ve been stubborn and in denial this winter because of how good it was going for me before that. I needed to hear it from other people (especially others with experience).
I’ll get started on rounding up my paperwork and give the doc a call to make an appointment. I need to get myself taken care of so I can enjoy as much as possible!
I hope you all have a great rest of your week and thank you again!!!!!
Hugs to you all – -
March 12, 2008 at 2:25 pm
Oops – Hi Jerimy! I posted my reply before I saw your response! I felt horrible the summer I was diagnosed. I was tired all the time and sore and it’s so odd to not be able to feel your feet and legs. Its even scary to do normal things like crossing the street….I was afraid a car would come out of nowhere and I wouldn’t be able to get out of the way fast enough. I even fell down once at work in front of the receptionist…flat on my face and the only thing I could do was laugh because I couldn’t catch myself. It was really embarrassing. Anyways what I’m getting at is that even when I felt so sick, I tried really hard to be positive and to enjoy the other things that were good in my life. I still do that today because I know that life is what you make of it….you get back what you put out. I know someday I may not be able to ski but there are other fun ways I can be involved. My husband is really supportive and he’s also involved in skiing so its great we can do those things together and he helps me stay upbeat on my “grumpy” days.
Thanks Jerimy for welcoming me here. I know I can come here to spread good news or gripe and people will be helpful. I hope you have a good day! -
March 12, 2008 at 3:17 pm
Welcome to our group.
I was dx in Nov 2007 wtih CIDP and so far none of the tx has worked. I am homebound except for MD app’ts and getting PT/OT at home.
My MD put me on fish oil tablets, stress b 12 tas, and Cq10 tabs, Calicium tabs, Folic Acid. Stated all of these assists in rebuilding of the myelin sheath.
I sgree with everyone’s replies and get to the MD ASAP:) -
March 12, 2008 at 7:43 pm
Hi Beth, thanks for the vitamin suggestions. I wanted to ask my doc about those too. I’m all for “natural” supplements as I don’t like taking precriptions meds very much (who does, right?). Sometimes though we just can’t avoid them! I’m sorry to hear you’re home bound so much, I hope they find a treatment that works for you very soon. I’m sending positive thoughts your way and I am going to make an appointment with my doc this week.
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