Questions from a full time athlete

Greetings,

The best answer is that everyone is different…I know that is not what you wanted to hear. I am 36 I was 32 almost 33 when I was dx. with CIDP. When I was dx I was a perfectly healthy active stay at home mother of 2 young children who hadn’t ever been in the hospital other than for childbirth. Now I am on IVIG every month and have been for the last 3 years. I live a fairly normal life…not much has changed other than I know my limits. ( I always tell my friends I am great but just don’t ask me to come help you move your house!) I hope IVIG works as well for you as it has for me. Keep your head up and I wish you well.

Julia

[QUOTE=powertapped]I’m suspecious that I have CIDP. Will I be good as new after medicinal treatments, predno and IVIG? Will these treatments keep the strength I have now, less, more?
What are the ages are the most common for this disorder?[/QUOTE]

My dx was at age 45. Before starting IVIG, I declined to the point where walking was difficult and I was at risk for falling. Before that, I rode my bike or walked ewverywherer and was in good shape. After six months of IVIG I was able to run a little again.

There is a shortage of really good, current stats for CIDP. The neuro clinic I go to keeps its own stats, and they told me that the typical age of onset among their patients was about 10 years older than me, but there is a lot of variation around that “typical”.

All I can say to you is that everyone is different, and a lot of people find ways of living with chronic illnesses. You don’t really provide much information, so I don’t know what it is that is making you think you have a rare nerve disease, or how it is affecting your life. If it really is affecting you — affecting your emotional state, affecting your ability to work or to plan for the future, affecting your ability to have a full social life or to do things for yourself around the house — then you should turn to someone for counselling. Even if you are just worried about possibly having a serious illness, try to find a counsellor who specializes in serious illness. It won’t hurt, probably will help, and will give you an opportunity to feel that you are taking control of some issues, and that is important.

If you have CIDP, and if IVIG works for you, and if it is administered early and often and then carefully phased out, you will be able to recover a lot of what you have in terms of movement and strength. Fatigue, however, may present a problem. Have you ever been laid up with an injury that took weeks to heal? Remember what it was like getting back in shape? This is a bit more difficult, because there are a lot of other things going on.

After my “recovery” I found that IVIG was becoming less and less effective, culminating with me using a wheelchair for a few weeks. Now I am on prednisone, azathioprine and weekly plasma exchange, and after a couple of months of that I am back to using one cane. I hope to be dancing by the end of October.

I am also starting a new business using some of the help and resources I have found during my journey through the medical and social service systems. I realized that I would not be able to stay in my old life of 16-hour days and missed lunches, and I thought carefully about what kind of transition I would need to make. That is something a counsellor can help you figure out — IF you have a chronic illness. I hope you don’t, even though it is not the end of the world, honest. My wish for you is that things become clearer, and better, quickly.

powertapped,

If many people respond to you, you will find out how different we are. The first word in CIDP is Chronic. That means it keeps on happening. Some people are relapse/remitting. They have attacks, and then have a level of recovery. Then an attack, then some recovery, etc, etc. Others are progressive, they don’t have a recovery cycle, they just get worse. Most are relapse/remitting. Some people (about 5%) experience total remission at a point.

CIDP is an attack of the immune system upon the myelin sheath that surrounds the nerves. For simplicity purposes, the nerves don’t work as well without the myelin sheath. As a result of the attacks, the symptoms you have appear. The damage may happen to sensory nerves (you go numb, or burning shooting pains, and the like) or damage to the nerves that supply the muscles with signals, and you experience weakness and fatigue.

In relapse/remitting, the attack phase happens, and then wanes. During the non-attack time, the body rebuilds myelin, and there is recovery. IVIG shortens the attack period. Prednisone is an immunosuppressant, trying to keep the immune system down. Prednisone is also a steroid, giving extra energy, and helping to heal muscles, etc.

How well you deal with CIDP depends on how severe the attack phase is. Some people suffer only minor annoyances, while others go to the hospital. Some require power chairs to get around, and some have complete mobility. It all depends on the severity of the attacks, and how quickly the body recovers, or how fully the body recovers.

I was 31 when I first noticed symptoms. My progression was very slow for 10 years. In 1999 my decline became a bit more quickly. In 2004 I filed for disability, now I use a powerchair for walking distances greater than a football field. I am 48 now. If I over do it, I get to spend a day or two in bed to recover.

If you haven’t yet been diagnosed, I hope things go other ways for you, but if you do indeed have CIDP, there are ways of living with it, dealing with it, and moving forward.

Take care
Dick S

Powertapped,

<> Most likely not, sorry to say, but you might be. <> Assuming you are quite strong at the moment, almost certainly not more, and likely less. Assuming that you are having difficulty walking, but can still walk a quarter of a mile or so, probably, although not definitely, more. <> The average age is around 50 years (although I suspect that is really the average age of diagnosis, with very mild symptoms occurring much earlier for many people), with a very wide standard deviation. It can happen at any age.

However, all of the other answers so far are much better than mine, for the simple reason that the statistics are not fate.

Why are you suspicious that you have CIDP? There are several neurological, endocrine, vascular, and nutritional diseases/conditions/deficits that have similar symptoms to CIDP. Your best bet is to see your primary care doctor and try to get a referral to a neurologist. Try to do it soon.

Be warned that it may take a few months to get to a diagnosis, even if you start now. That is because if other conditions are found, it is necessary to get them under control first. It is also possible that your disease may not be advanced enough to make the diagnosis straightforward.

Hang in there, and feel free to ask questions.

MarkEns

[QUOTE=powertapped]I’m suspecious that I have CIDP. Will I be good as new after medicinal treatments, predno and IVIG? Will these treatments keep the strength I have now, less, more?
What are the ages are the most common for this disorder?[/QUOTE]

I think you need to be diagnosed by a Neuro and proceed from there.

IVIG is not a cure only a treatment. There also is no average age of onset for CIDP, even babies get it.

Powertapped,

CIDP usually presents symmetrically. That your weakness is on only one side would suggest that your condition is not CIDP. However, some people do have CIDP with asymmetrical presentation, so follow Brandy’s advise.

As much as you may hate to lay off your exercise, it might be prudent to cut back to a level that will help keep you in reasonable shape for a non-athlete. If your nerves are damaged, a rigorous routine will not help and may aggravate the nerves. If they are not, a couple of weeks at a lower level should not hurt your career too badly. The best bet is to listen to your body. If you hurt or seem fatigued even a little more than usual from your training, cut back.

Godspeed in finding a diagnosis soon.
MarkEns