Hi everyone, just got back from a visit to the GP to get a referral to his neuro friend. He came up with a new term, multiple sclerosis. Told me it could be this, or ALs, or one or two other kinds which he is currently suspecting. He's gonna leave it up to the neuro whom I am seeing tomorrow afternoon, so am wondering what should I be asking.

Tried doing a search on ALS and MS, both sounds pretty similar, except that ALS is sort of diagnosed using EMG, while MRIs are useful in MS. One good thing tho, is that MS can be sort of controlled using medications. Am still amazed that my diagnosis has turned from MG to thyroid/MND/MS/ALS into possible ALS, then back to MS/ALS/MND. I just like to see if anyone here has any experience with this, and what should I know before I see the neuro tomorrow? Just so that he doesn't throw any terms on me which I have not heard before. Also, how do I differentiate between all these?

Would really appreciate if anyone can help!

P/S: I'm still reading all the posts! Just that am really tired nowadays so have not been posting.... Do hope this post finds all of you well and happy!

Connie, I am so sorry you are going through this. It seems all of us here with MG seem to have other illness as well, and I am not sure if maybe MG has changed and all our other symptoms are MG or if we are all being misDXed. I know my Neuro says I have 3 illnesses but none of them seem to be what I am feeling {other then the MG} Have they done a brain scan on you yet? If you have MS it would show up as lesions on your brain {I have some lesions but Dr says it is not MS} I just don't know what to tell you but you will be in my thoughts and I look forward to you letting us know what happens.

Sorry to hear your news.

As Joanmarie says your brain scans would show leisons on them if you had MS. Are they suggesting a lumbar puncture?

With ALS I have seen somewhere that the symptoms start from the feet up where as with MG the symptoms go from the head down. Usually (I use that term losely) starting with occular symptoms.

I hope they manage to figure it out. You must be so stressed out. I really feel for you.

Apologies for spelling mistakes, brain, eyes and fingers are not playing the game today!

Love
Rach

Hi Connie, my name is Sandy and my hubby has ms. There are many test that are done to rule out ms. MRI, LP, EEG, blood work, etc.. My suggestion for you is to go over to our ms forum and look around and ask whatever you need to. Some people go years before being diagnosed and then some get a diagnosis quickly.

My advice is to not research too much because your doctor isn't sure about what's going on. Write down all your symptoms and any questions you have for the neuro before you go. Include when these symptoms started and how they affect you, what helps, etc..

Hi Connie,

I have MS. I was diagnosed 2-7-08 and have been on Rebif since about a week after. They should do brain and spinal MRI's with and without contrast if MS is something they truly suspect. They may also do a lumbar puncture and should do lots of blood work to rule out things like lime disease and many others. MS isn't something that they can just look at one test and diagnose it. They have to look at all of it and rule out lots of other things. Although I didn't have the LP, but that was because there was enough with clinical symptoms and lesions and I was so afraid of needles in my spine I had both my babies naturally.

For me I have always been the kind that when the doctor suggests something I have to go research it to see if I think it fits or not. So I understand you researching it all.

I think going over to the MS board and asking questions there would be a good thing. You could also send me a personal message if you want I will answer any questions I can. But definitely write down any questions so that you don't forget to ask any and it would be good to bring someone with you. I know I always get more out of appointments when there is someone else there to help me communicate with the doctor what's been going on. Doctors tend to believe when my husband tells them about one of my symptoms but not as much when just I tell them.

I know I wanted to tell you more but I have one sick kid and one kid who's not sick and I'm trying to keep them apart so he doesn't get what she has. So I keep getting side tracked and forgetting what I was going to say. If you have more specific questions just let me know and I will try and answer what I can.

Kristie

Thanks everyone, for your replies... I just got my diagnosis of MND confirmed, tho at the moment my neuro cant be exactly sure which subtype it falls into as mine seems to be overlapping both ALS and PLS. My doc says its extremely obvious as I have all the signs.. I think he said positive plantar response, babinski etc.. With stiff limbs,hyper reflexes etc.. I am also really happy that I found him, as he said the other doctors whom I saw locally previously were all idiots. Haha! They had referred me to a psychiatrist which he was extremely surprised and annoyed. He said he isnt sure what all the doctors are doing, and that they probably call themselves consultants for fun. He said if any other docs were to do this to me again, i should tell them to go see a psychiatrist themselves, and quote him. Lol....

I feel so blessed, really. To have finally found someone who believes in what I am feeling and knows what he is talking about. He has also kindly referred me to this neuro at this hospital where I will be able to receive subsidies for whateever treatment that is scheduled...

He has also said that though most doctors says MND is incurable, he still likes to believe that there is a cause and solution for everything, and he will do his best to help me. If the doctor he has referred cant help me, then come back to him and he will help me.

Currently he has only given me clonotril to help me with my cramps and stiffness, though I just searched and found out that clonotril is used for epilepsy.

He said its shameful that doctors locally cant help me, and that I had to go overseas for someone to point me in the correct direction. HE said something has to be done or my progression's gonna get faster and it will be tougher on me.

I feel so relieved frankly, and am just so touched by what this neuro said today. =) Though its not a great diagnosis, at least I now know what I'm dealing with. Lol. But I'm still gonna hang around here, just cant bear to leave this forum.

Im sort all mixed up with my emotions, Im so glad you have found a Dr that sounds absolutely fantastic and wants to work with you. Im so sorry that you have the diagnosis of MND.

Im really pleased that you want to stay around on the forum, because I really want you to stick around and keep us updated with everything!

Your so brave Connie and you have battled to get your diagnosis. Now hopefully they can start relieving your symptoms and start to make you feel strong again.

Love
Rach

Hi Connie,

I am so sorry you got a diagnoses of MND, but so happy you have found a great doctor who seems determined to help you. You have been through so much and have stayed so strong through it all...I admire your courage. I'm so happy you are going to stay on the forum...it wouldn't be the same without you here! So you hang in there sweetie and know we are all here for you. Take care...it's going to get better.

Big Hugs,
Pat

I'm so happy that you found a good doctor...One who seems to be a good advocate for you...It sounds like he's really going to help you get all of the things that you need...I'm sorry that it's MND, but I understand your relief in finally getting an answer...The not knowing can be the worse...I agree that all of those other doctors need to see psychiatrists...What a joke they were....It's great that your new doc. pointed this out.. Shows he's got hutzpa!

I'm glad that you're going to stick around the forum because it definately wouldn't be the same without you! You're such a strong, wonderful person and everyone is blessed in knowing you, Connie...

Connie, I don't have sufficient words for how I feel. I am sorry you have an NMD. I'm not sure I could deal with it as well as you are. I'm sorry you had to go so far away for help. I can relate.

I hope you do stay! You are so special, so giving. I'm very glad you are here with us.


Annie