I have a Question
AnonymousApril 21, 2007 at 3:08 pm
I looked at your posts. You have only started 3 and you have not been a member for very long. Some questions have lots of replys, some not as many. If it is a question that not very many ppl. have experienced, they are not going to write.
I would not give up. I have posted many threads. I learn something with each thread. If you learn something new every day about your disease ,I think you would be doing great.
I am also from MS. I have a 3 year old with cidp.
AnonymousApril 21, 2007 at 3:28 pm
I agree with Lori, some people have answered your posts. You only posted 16 times, why not stay with us and keep posting. We are compassionate people who really do care. Sometimes members are in a bad way thenselves and don’t post when they are feeling very bad that day, but they don’t give up and they stay to try and learn as much as they can from others. We always need members who can share their stories for any new members and we try to help if we can.
So stay awhile, vent if you feel like it or just share your story with others.:)
AnonymousApril 21, 2007 at 4:23 pm
I don’t think anyone of us will object to you printing out whatever will help you. Many times we don’t respond to posts because we can’t relate. I have CIDP, never had GBS, so many GBS questions I cannot give advice on. I cannot get SSDI, so there is no way I could tell anyone how to do this. There are alot of old posts on SSDI that you can pull up that should help. If you want to give us another try, we welcome you to stay here and keep on posting. We listen to vents and frustration too. We’ll pray for those going through bad times. But please remember that you don’t always get replies. I am one of the “oldies” on this forum, well known (I think) and I don’t always get replies.
AnonymousApril 21, 2007 at 7:48 pm
Welcome 🙂 Please don’t give up on us now! We were hoping to get to know you. I know that the answers don’t come as quickly as we want sometimes but as you continue to read about “The Family” you will realize that alot of us really struggle with daily living. I know that some days I just don’t have the energy to respond “right then”.
And that’s what we are all about ~ supporting each other when and where we can! Again, welcome.
AnonymousApril 21, 2007 at 9:14 pm
I used to bring all the information on the board for my docs – I felt confident going so well prepared. Im also sure you are aware on some doctors feelings when you mention doing research on the internet and joining a support group : while some are ready to embrace that because they are learning things too ….. some become upset or irritated because various reasons, one being I can only imagine that they dont like you knowing more than them and telling them what is going on. Let us know the outcome of your doc visit 🙂 .
Please dont stop writing on the forum, I too went back to look and see your posts. I honestly dont think anyone is getting tired of you venting. I know the forums get me very stressed out most of the time, my main goal was to try and lend a sympathetic ear and also encourage patients and families going through this very hard time, however, I often delete and redelete posts wondering if I am upsetting someone or offending anyone. We all need to vent and get these things off our chests, and I dont know where I would be without the knowledge and support of the forum when I joined until now.
AnonymousApril 21, 2007 at 9:41 pm
Thanks, everyone. I guess it was one of my whining days. I just don’t want to bug anybody. I have gone so many years with unanswered questions and then to find this forum, it has been just great. If you knew me in person, I am a big talker, so a lot of time I feel that I get on peoples nerves going on and on. Thanks so much for just being there whan I really need it and I really look forward to getting to know everyone.
Second Question: I just some information concerning anyone have pain of headaches and getting tired and the pain of the body hurting all over. When I do a lot of activity, I will take a bad migraine headache and this week I have notice after riding to town a couple of times, that I whole body hurt. I couldn’t say if it was the muscles or what. It felt like every bones in my body hurt. I have only barely been able to work on my left leg, it feels like the bone at my hip has a knife stuck in it. If anyone has information that you could share with me it would be greatly appreciated. I am trying to gather all my information before I see him on May 6th. Last visit he told me he had never heard of GBS/MF residues. I am taking him paperwork to show that it is some. Know I need the pain info so maybe I can convince hime to give me something for occational use when it gets so band.
AnonymousApril 22, 2007 at 8:24 am
I don’t have a problem with you printing out info from this site, whatever helps your cause. Sounds like your Doc needs to read up a bit more about GBS/MF because there’s enough info out there today which clearly shows that people suffer from residuals and if everyday people like myself can find it, then your Doc should have no problem with the resources that are available to him/her. Refer your Doc to this site, I know a couple of resident Docs at my hosp were going to have a look at this site because they found it interesting when I told them about it so you never know. Good luck 🙂
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I have a question
AnonymousFebruary 23, 2007 at 5:31 pm
Hi everyone, First I’ll tell you all a little about me. 1/12/07 I went to the ER was just getting over a cold got up that day and could hardy walk, and had double vision. Was admitted that night, and by the next day I was no longer able to stand. On 1/14/07 The Neuro seen me ordered a cat scan and a MRI. The next day 1/15/07 he told me he thought I had Miller Fisher syndrome. He ordered a spinal tap to confirm his thoughts. Started IVIG that night for five nights. Was sent home from the hospital 1/20/07 had to use a walker for the first week then a cane for the next week. Now I can walk fairly well again other than a little off balance now and then, but I still have the double vision…. Any way my question is. What is an EMG and what dose it tell the doctors? I have seen some references to this in some of the post I’ve read, and I’m not sure if I have had one or not.
AnonymousFebruary 23, 2007 at 9:18 pm
[SIZE=3][FONT=Times New Roman]Hi Dave and welcome to the forum. I’m sorry you had to find us but we are all happy you are here. Let me introduce myself. I’m KC, my Mom (KC’s Mom) has CIDP and we are both members here. 🙂 [/FONT][/SIZE]
[SIZE=3][FONT=Times New Roman]An EMG is [B]Electromyography[/B] and traces what your muscles are doing at rest and in use. I had 2 EMG’s for carpel tunnel and in that test along with the test my Mom had what the doc’s were looking for was how well the nerves were sending the messages to you muscles. In my case, with carpel tunnel, the doc’s were looking to find where the congestion or blockage was but the test for my Mom, though the same method, the doc’s were looking to see how well the message was getting through the nerves. With GBS and it’s vairous flavors the nerve endings are effected. (axons and the mylin sheaths) The EMG will tell the doc’s how well the message is getting to the muscles. There are 3 parts to the test…that I remember. One of which is an audio of the muscle reaction. In my Mom’s case her nero heard the CIDP. How? Years of experience I guess, I’m not a doc and couldn’t tell you more. [/FONT][/SIZE]
[SIZE=3][FONT=Times New Roman]What they do is stick a thin needle, probe or lead, if you will, into the top of one muscle or group of muscles and another at the bottom. (mostly painless) They then ask you to move the muscle or send a pulse through the leads to see how the muscles are reacting to the stimulation. If I’m not mistaken they actually look and listen at some of the results on an osliscope. [/FONT][/SIZE]
[SIZE=3][FONT=Times New Roman]An EMG is a great way to see how the nerves are reacting to stimuli. I have to tell you my funny story with my last EMG. It was conducted on the 3rd floor of Jefferson Hospital in Philadelphia. After the second lead was put in..I pulled in a local AM radio station, I believe the traffic was being reported. [/FONT][/SIZE]
[SIZE=3][FONT=Times New Roman]Please keep us up to date with your tests![/FONT][/SIZE]
[SIZE=3][FONT=Times New Roman]KC[/FONT][/SIZE]
AnonymousFebruary 23, 2007 at 11:21 pm
like kc says, an electromyography (EMG) is a test that checks if your muscles are working ok. a thin needle electrode is inserted into muscles that need testing. an electical signal is sent to the muscle & its rersponse is recorded. another version of this test, a nerve conduction study (NCV), checks if your nerves are working ok. a pad electrode is taped over the nerves to be tested. an electrical signal is sent to the nerve & its response is recorded. the nerves tested can be both motor [muscles] & sensory [what you feel]. take care. be well.
gene gbs 8-99
in numbers there is strength
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