I was diagnosed CIDP Aug 2011 although I feel I have had symptons for probably 5 years and my Gp , my heart spec and my knee replacement spec plus some neuro tests did not show CIDP ( I have doubts now that any of these peolple even knew what it was ). I have been on Intrgram now for 7 months and tho I have continued to deteriorate I am hopeful that I will reach a point of stability. Is thata reasonable expectation? I am still very active gardening , mowing fishing etc but just lately it is all becoming more difficult and even walking a short distance brings on leg tiredness , general weariness , lack of personal drive and lower back soreness. I am also losing strength.I have had the numbness , stings , pins and needles , dropping and stumbling for some years now but tended to disregard it all as I could still lead a reasonably active life .The latest deterioration has me scared and the thought of paralysis mortifies me.Can I expect the treatment to help mr or will I just go down hill real quick and is anyone out there in a sort of housebound or bed ridden state. If so how do they cope and if that is my prospect how long will it take to reach that point? .I was wondering also if any natural medicines may be useful to supplement the IVG.
Did they do EMG and spinal tap to determine CIDP? If you feel like your symptoms are worse find a neurologists you can trust. The good ones are usually at university hospitals or medical centers. You can call or use the hospital online "find a doctor" to treat CIDP your area. It is a rare syndrome but there are doctors who are great at diagnosing and treating it. It's a good idea to have EMG's to track progress and regress. I also do 4 or5 "typical neuro tests" like walking toe to toe or holding my arms in the air; then with my eyes closed.... If there is a noticable change there is cause for concern. It takes time to get appointments so don't wait too long. In the mean time see if your present doctor can increase your meds now. It's better to error on that side so you don't get worse. I drink lots of water before IVIG to hydrate and lots during and after to cleanse the kidneys. Also, B12 and Niacin seem to make a difference. No to bedridden!!! No to houseridden!!!
Your symptoms and concern are similar to mine. IVIG is the main medication I use and it seems to have stabilized me over the past 20 months. I also ignored my symptoms for about 6 months and it took another 6 months to get the proper diagnosis. I agree the prospects of "housebound" or "bedridden" are alarming. You will read on this forum how some of us force ourselves to stay involved and exercise the specific muscles that are deteriorating. A therapist can help you or just talk to a certified fitness person at your fitness center for guidance. Rocker sole shoes have helped me and I walk at a fast pace in them for 30 minutes 3X a week plus additional exercises to complete my full hour. I could not do this in regular street shoes. My calf muscles are now half their former size due to the CIDP.
Hi Mabes, thanks for replying.. I had various tests but the confirmatin of CIDP came from Blood Tests . I have had a retest recently and am keen to hear about the results .
Personally I am not sure about how the IVG is going . I have definitely deteriorated since diagnosed but just maybe after months of treatment I may be consolidating .. not sure. Note your comments re water ,B12 and Niacin.
Thanks . I have nothing further to report at the moment .I am not winning yet.Could you please expand on "roller shoes"
Kind Regards Ernie .
JMichaelS said:
Ernie,
Your symptoms and concern are similar to mine. IVIG is the main medication I use and it seems to have stabilized me over the past 20 months. I also ignored my symptoms for about 6 months and it took another 6 months to get the proper diagnosis. I agree the prospects of "housebound" or "bedridden" are alarming. You will read on this forum how some of us force ourselves to stay involved and exercise the specific muscles that are deteriorating. A therapist can help you or just talk to a certified fitness person at your fitness center for guidance. Rocker sole shoes have helped me and I walk at a fast pace in them for 30 minutes 3X a week plus additional exercises to complete my full hour. I could not do this in regular street shoes. My calf muscles are now half their former size due to the CIDP.
The shoes are sometimes referred to as "rocker sole shoes". They help me walk because they provide the natural dorsi-flexion (rolling) that I have lost(because of muscle wasting in my calf muscles). The soles on the less expensive brand (Avia "Avi-Motion) looks just like the rocker on a rocking chair. I really like the much more expensive version from the chain "Foot Solutions" called "Chung-Shi". You can "Google" either and see for yourself. With regular soles I limp after a few minutes. With the rocker soles I go almost all day without limping. Limping puts inappropriate pressure on my low back and knees causing pain. Be aware that some really dont get any help from these shoes. Several nurses I know also love these shoes because they work long shifts and have to walk a lot in the hospital.
oziurn said:
Hi Mike ,
Thanks . I have nothing further to report at the moment .I am not winning yet.Could you please expand on "roller shoes"
Kind Regards Ernie .
JMichaelS said:
Ernie,
Your symptoms and concern are similar to mine. IVIG is the main medication I use and it seems to have stabilized me over the past 20 months. I also ignored my symptoms for about 6 months and it took another 6 months to get the proper diagnosis. I agree the prospects of "housebound" or "bedridden" are alarming. You will read on this forum how some of us force ourselves to stay involved and exercise the specific muscles that are deteriorating. A therapist can help you or just talk to a certified fitness person at your fitness center for guidance. Rocker sole shoes have helped me and I walk at a fast pace in them for 30 minutes 3X a week plus additional exercises to complete my full hour. I could not do this in regular street shoes. My calf muscles are now half their former size due to the CIDP.
The following info will differ from what you have experienced (and written) and what others may have said on this forum but my physician told me the diagnosis is not as straight forward and simple as a blood test or one EMG. I have pasted in a link that addresses CIDP in a fairly easy to understand way. If you are not familiar with medical terminology you might get a friend (nurse, pharmacist, physician) to help you interpret this. But, the more we know the better we can help direct our own health. Unfortunately, this is a very very complicated and difficult disease to DX and TX and although we all want to simplify and address the treatment using the "lowest common denominator" approach it still requires enormous cooperation among health scientists and patients. If you are interested in other links about CIDP let me know.
Here is one line from the article and if you are interested in reading it the link follows:Laboratory studies — There are no blood tests that specifically point to CIDP. However, a number of studies are useful to look for disorders that are either associated with or mimic CIDP [30]. These include:
The B12 can only enhance the treatments of Intrgram, IVIG. If your not improving a higher dose or more frequent infusions may improve results. If still slipping additional immunsuppressants may be necessary to stop progression before there's axonal damage. Methylprednisolone is commonly used in the next step if IVIG alone is not enough. It's a steroid, that is believed to have less side effects when, administer through an iv. Then after that a next step would be more powerful ones like Immuran or Cellcept . You still have alot of options left. Also, there is a Queensland GBS/CIDP support group. They can offer local doctor referrals and many other answers for questions regarding healthcare in Australia. I know some of names and protocals are different than the States. Being such a rare syndrome it's a valuable resource.
The speed that this hits us or takes us down is different for everyone. I've read the hardest part of coping with this illnes is that we don't know how long or how far it will go. I agree completely. I was hit fast and hard. House-bed ridden for about a year. I made sure to always walk even a few steps, many times throughout the day. Keep all your muscles stretched, that's really important. So is rest, I wouldn't overdue if you feel you are declining. That made me slip faster. Some physical therapist were not aware of that I should mention.
What did give me comfort is having a plan and preparing for the worst. As I continued to decline there were plans, agreed to by my family, already in place. Fortunately, the medicines did kick in and it took a long time but I did get much better. My favorite activities that helped me get well was gardening and fishing too....still are.