A few suggestions

December 20, 2011 at 3:33 pm

Perhaps my experiences will be of some help to you.

I had the lumbar puncture done before starting the loading dose. It helped confirm the diagnosis of CIDP.

I had the loading dose over 5 consecutive days as an outpatient at Johns Hopkins Hospital, where I received my diagnosis and treatment. Luckily, I live only 30 minutes away. I developed headaches after two of the 5 treatments. I reported this to my doctor, and he prescribed 20 cc decadron (dexamethasone) intravenously just PRIOR to the administration of the IVIG. No more headaches! I also received the tylenol and benadryl prior to the infusion.

Hopkins also co-administers saline with the IVIG. I would easily use up a large bottle/bag of saline during a normal treatment. My doctor has told me it is the only thing that can be co-administered with the IVIG.

Hopkins also ramps up the speed of infusion in 5 stages, essentially doubling the flow rate at each stage. Stages 1 and 2 last for 30 minutes, stages 3 and 4 for an hour, and stage 5 is the balance of the infusion with a maximum rate of 188 (if my memory serves me correctly). Yes, the infusions did take a while (which I used to read), but overall I was comfortable and fortunately experienced no further adverse effects. Often I had to will myself NOT to go home and do a lot of work around the house but to relax. The Decadron, saline, and 5 stage ramp-up of the IVIG all contributed significantly to the fact that I only experienced headache twice, and no other adverse reactions. Hopkins has a 12 page protocol for IVIG infusions, and it appears that they do as good a job as anyone in administering this treatment.

My maintenance infusions were at 3 week intervals, and it was not until after the second maintenance dose that I noticed improvement. Within the next two maintenance infusions my motor nerves had recovered to almost 100%. My doctor kept me on the maintenance dose for a little over a year, during which the sensory nerves also improved dramatically. About 15 months after a normal and full maintenance dose schedule, he started tapering down on the IVIG, eventually terminating the infusions altogether. This was several years ago.

A conversation I had with my doctor about the efficacy of IVIG treatment for CIDP may also be helpful. He told me that 40% of patients respond very well to IVIG treatment, another 40% show some response, and for 20% IVIG has no real effect.

I hope and pray that you will fall in that first 40% and will respond very positively to your treatment. If I may offer one more word of advice, if you have any question or issue with your diagnosis, may I strongly recommend that you be seen at one of the GBS-CIDP Foundation Centers of Excellence. My doctor, who is a Professor of Neurology at Johns Hopkins Hospital as well as a clinician and researcher in peripheral nerve disease, has also told me that he sees many patients who come to him for a second opinion, and that he finds significant errors in the original diagnosis. He has told me that sometimes more than 40% of the patients he sees has an incorrect diagnosis. There are a number of excellent hospitals such as the Mayo Clinic which have not applied to be designated a Center of Excellence (although I am sure they would easily qualify), but the idea behind the Centers of Excellence program is to provide GBS and CIDP patients with information about medical centers that are known to have the skills and talent available for accurate diagnosis and treatment of these terrible diseases. Correct diagnosis is essential for proper treatment.

I hope this helps! My prayers and best wishes for a rapid recovery!

A few suggestions

December 1, 2009 at 12:50 am

Hi, we are wishing that things get better for you in all these areas.

There are quite a number of antidepressants and many do work in different ways and have different side effects. If it is decided by you and others that the wellbutin is not doing “enough”, it might be worth considering either Cymbalta (seratonin and norepinephrine) or even Elavil. Elavil is one of the older medicines used for pain and for depression and Cymbalta is one of the newer medicines used for both of these.

There are actually a number of different kinds of nerves–one kind for pain, one for light touch, one for temperature, one kind for position, and one for vibration. Some people have only one kind affected, but GBS/CIDP often affects all the kinds.

Regarding SSI, would it be possible to see a rehabilitation medicine specialist and get an evaluation by this person and PT/OT with documentation of all the challenges you have AS WELL AS “medical statements” that these are really part of this stupid syndrome. I think lots of people cannot understand how hard it is to sit or to walk. You could also ask the rehabilitation person if there is some way to be able to sit more comfortably–such as a special chair and to be able to move on the job easier such as with an electric scooter. The reason I bring this up is that sometimes the best way to say how hard it is to work is to list all the ways that you would need modifications. Be sure also in what you say and in what people say for you to use the word safe a lot–such as that if you tend to start tripping more after trying to walk for a while, say so. People really listen about falling and safety. I have not applied for SSI, but I did apply for a scooter to use at work and this is what I was told–to talk about safety and to be as precise as possible–such as that I had to rest after walking about 100 steps.

The other suggestion is to get a lawyer for the appeal. I would tend to go with the rehab doctor and one additional reason is that you might learn something that would really help in other ways. I saw a rehabilitation doctor at a Rehabilitation Hospital for the assessment about the wheelchair. I went to see him with the hope for the appeal to work, but also with a couple of specific questions so that I would not feel disappointed no matter the outcome.

WithHope for a cure of these diseases.

a few suggestions

May 1, 2007 at 3:12 pm

Hi Liz,

Here are some easy tips and suggestions that will help you maintain your computer. I will try to explain as if you have never done this before (just in case). Reading the instructions are harder than it is to do it once you get familiar w/the process.

1. Remove excess program files that you never use:

start -> control panel -> add or remove software

Take a look at the programs that you have that are installed. For example do you have old programs installed that are never used? LiveUpdate (Symantec Corp) is Norton antivirus usually installed by the manufacturer, and takes ~ 9+MB. Highlight it, if you would like to remove it, and click “remove”. Repeat this process for other programs that you are certain you won’t need. Some of the things I removed are demo tax applications for 2003, email applications(Outlook), internet games I never play, programs for printers, cameras, or other devices that I no longer own. Do not remove any programs that you can’t tell what they are.

One thing you do want to have installed is Windows Software Updates. Scroll down, and highlight it – then look to the right of the box, it should show when you last used it (if installed) or offer to install it (if not installed)

3.When you are through, you will be instructed to reboot – click ok.

Each time you turn on your computer, you will now have fewer programs “hogging” your resources (memory, hard drive space).

By the way, rebooting will “load” your E Z Armour software that the tech installed. It usually runs in the background, which means that you don’t notice it. Take a look at the bottom, right corner of your screen. Next to the clock, highlight each icon – the program name associated w/each icon should pop up. If you find one for Armour, click on it (may have to double click). The program software will now appear in the foreground. Most times, there are tabs that give you options – “support” tab or “update” tab may be one that will connect you directly to obtain the key you need. You will most likely be asked to subscribe for a monthly fee. At one time when I used Computer Associates, I was able to talk to a live operator (something like instant messaging) through these program options when I had problems .

For your problems logging in to the forum, it may be that all your cookies from the site are deleted. It appears you are in now, so be sure to check the “remember me” box if you want to automatically log in each time you visit.

4. There is an award-winning free program that I use, and installed on both my kids’ computers: Ad-Aware by Lavasoft. It screens your hard drive for “monitoring” programs that are installed by other websites you have visited. You need to update the definitions on a regular basis, just like your virus software. (If you don’t understand this part I can explain over the phone easier) Here’s the address: [url]http://www.lavasoftusa.com/[/url]

5. After making changes to your programs, data, etc it is a good idea to defrag your hard drive. On my system, it is
start -> programs -> accessories -> system tools -> disk defragmenter. If you have never done this, it could take all night, depending on the size of your hard drive. Don’t be alarmed. Reboot when finished. You should find your computer running smoother.

Hope I have been of some help in making you comfortable with maintaince of your computer.


oops – forgot – ram is hardware that needs to be installed if you still feel your computer is running slow. I would very gently suggest to be careful if it is a laptop as they don’t have a lot of room for upgrades – adding parts under the hood makes them run hotter. Desktops are no problem.