multiple sclerosis?
 

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. :hug:

hi connie
 

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. :hug:

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..

:hug:

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.

:hug:Kristie

Thanks!
 

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.

Hi Connie
 

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:grouphug:

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

Hey Connie
 

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.

:hug:
Annie

Connie
I am speechless, I am so sorry you have MND, & have to travel for appts., I hope they can keep the stem cell research going, so important !

Connie - - I am so glad you found such a wonderful doctor! Sounds like he will be there for you whenever you may need him. Perhaps there is some relief in having a diagnosis, but I am sorry it is NMD.

Annie said it best - you are special and we're glad you are here. Pls keep us posted as you are able.

Sue

Touched
 

Hi guys.. I'm so touched by all of your kindness. Tears welled in my eyes as I read all of your messages. Thanks for allowing me to stay here even though I don't have MG! I've sure learnt soo much from all of you here, feel like giving you all a great big bear hug.

Thank you for all that you are. Thanks for being with me through the undiagnosed period, for keeping me sane, and letting me know that I'm not alone.

Words cannot express what I am feeling inside
There's so much to say, yet I don't know just how to express it to all of you.
So tried writing something short, just for all of you, to show how special you all are to me.

Though we're all far apart, the closeness is in our hearts
Internet friends they say, they won't be here to stay
But they can never imagine, how many times I've thought about you
How thankful I am, that you're all such good friends to me
We have once-in-a-lifetime friendship
the kind that isn't based just on fun
but acceptance and love instead
It is reassuring to know
that all one of us have to do is to post a note
and immediately without question, without reservation,
we will respond immediately
I never feel quite as "okay" or understood with anyone else as I do with all of you.

Thank you to all you wonderful people.

Rach: Yes! I look forward to walking not like a stick man anymore. Lol. I look forward to focusing on dealing with this monster, and also taking time off to do the tihngs I want to do.. am still hoping you'll get your diagnosis soon too, and start feeling better with the oxygen! And praying that you'll meet this superb doctor too. Hee.

Pat: I love you! Tho we've not met, like I always said, your sweetness shows through in your short messages. I can't bear to leave u too! It'll get better as long as I still have all of you.

Nicky: Thanks so much sweetie. Am really happy to have found you here too, thanks for always looking out for me. I love my new doc too! Loved it when he said my previous docs shamed the industry. Lol. Just that I still have this phobia for the neuro I'm seeing next tue.

Annie: You have such a special place here! You're always amazing, and I perk up whenever I see ur name as I know you'll have powerful info to add on and help. *hugs* you're so special to me!

Mary: Yes. I hope so too. That a cure can be found. Its devastating to see people literally wasting away with MND. And also for those scheming business people to stop using scams to cheat PALS money. Lol..

Sue: Thanks so much hon! Yes, i'm relieved, at least it isnt an invisible monster I'm dealing with. Now it has a name at least.

Lastly a great big hug to all of you! :grouphug: oh gosh. I just love today. I can tyoe so much!

Connie,

I'm so sorry about the mnd diagnosis, trying to express how I feel will just not sound right, so this will have to do.
I'm glad you've found a good doctor.
I'm soooo happy you are sticking round, cos the place wouldn't be the same without you.
take care, I'm thinking of you
Kate

Hi Connie!
 

Thank you!
 

Thanks Erin and Kate!

You're all my inspiration! :hug: