Multiple Sclerosis

[mya1k9]

Hi! Just wanted to say I'm sorry your having to go through this. I didn't read all the comments but just wanted to chime in that my mom has had MS for 20+ years and in my case the best advice I can give you is stay positive and as active as you can. If you can't walk, try to keep up your arm strength or vice versa. Exercise is important for the body and mind. Focus on your positives. Hugs

 

[kimblebee]

How are you feeling this morning? Has the spinal headache gone away yet?

Any new thoughts or questions? I'll be here if you have some

 

[anniemae]

checking in on you OP. How are you today?

 

[doodle]

Praying for you OP.

 

[J'aime Paris]

Hugs to you and sending prayers your way!

 

[Mizzoufan]

checking in on you OP. How are you today?

About the same. Thanks for checking.

 

[Lilacs4Me]

Late to respond, and I haven't read through all of these, so I may be repeating. But here is my story -

My sister found out she had MS when she was 28, with two small children. She thought she had an eye infection that was actually a lesion on her optic nerve. I hear it's common to find out this way. She was put on medications - there are so many options out there and you will have to work with your Neuro to find the one that is right for you. They all have side effects and are expensive, but some affect people in different ways than others, and cost is usually picked up by insurance. My sister meets her deductible in Jan every year. She started with a baseline MRI - funny (ironic, not haha) story, she had an MRI done about a year before the MD diagnosis because another one of our sisters has a vascular disease that affects the blood vessels in her brain. Some of us chose to get an MRI to rule it out in ourselves. This sister was one who got one.

The neuro was able to tell, from the first MRI to the 2nd, about a year apart, that there was no sign of MS lesions at all in the first MRI, so they believe that her MS developed within a short time frame between the ages of 27-28. She is young for such a diagnosis, but she knows she did not have it before age 27 - at least no signs of it.

Her biggest complaints/symptoms in the past 11-12 years has been numbness with the flareups, and the side effects of the medications. She has been on daily injections, pills, IV's, the works. Certain medicines have made the flareups either less intense or farther in-between. I'm sorry that I don't know the names of the medications, but there have been so many advancements and new medications that have come out in the past decade that I'm sure there will be one that works for you.

Lastly, I wanted to let you know that I am a part of a 20 year MS study (about 4-5 years in, currently) through Brigham and Women's Hospital, Harvard Medical School, and the NIH in Washington DC. It's called GEMS if you look it up online, and you and your first degree relatives might qualify if you are interested. It's mostly occasionally answering questionnaires via email and surveys, but I have also given blood and saliva samples (they send everything you need and everything is prepaid - you just go to a local lab that does blood draws and give them the paperwork - they do the rest), I have been flown out to the NIH in Bethesda MD to do a two day MS testing with a MRI (they brought my sister out with me and did one for her as well....and anytime she is in the DC area and wants to do another MRI, they will do it for her for free).

Currently, I am in the middle of a two week period where I am wearing a actiwatch (like a fitbit) that is recording my sleep patterns. They sent me the actiwatch in the mail with instructions on what to do, and in 10 days - this is day three - I will throw it back in the prepaid box with the paperwork and ship it back.

Feel free to PM me if you would like more information. Good luck to you - my sister is about 11 years into her initial diagnosis, and she just spent NYE in Times Square with her teenagers and DH standing for hours waiting for the ball to drop with no problem. She has had her good days and bad days over the years, but all in all, she is doing great and you cannot tell she has MS from the outside at all. Her tests at the NIH were really good, and that was at 9 years in. The advancements in treatment and research have been amazing in recent years - make sure you find a neurologist who is willing to sit with you and take the time to go over all of your options to find the best treatment for you. Good luck and hugs to you

 

[mousefanmichelle]

Good morning! I hope that the spinal headache is getting better. I don't have any experience with MS but I do with a spinal headache. Stay flat. Stay really flat and try not to get up unless you have to. I had a spinal tap and I got that headache even though I didn't move. I am a normal headache sufferer and since I have them more times than not, I didn't want one from the spinal tap. Happened anyway, darnit. I was in misery. Worst headache I have ever had. I lasted a week. I just drank lots of caffeine and stayed flat. That helped a bit and each day got better but it sucked. Sorry you are having to go through all of this and I hope that you can get the answers you need. (hugs)

 

[AnnaFloridaLover]

Exactly, builds false hope. A person starts eating a "MS wonder diet" they suddenly become well again, thinks "oh wow it really works, have not had a relapse for xxx days/weeks/months".....who is to say the relapse wasn't on its way out and they would have had any more releases anyway? This disease is not predictable, your can not say "oh it is Wednesday i am due for a relapse, it just doesn't work that way.

Changing a diet for better health, overall, is great, but that is all, there is no cure for MS, lots of research but no cure, lots of new medications, but still no cure. I am sure if diet was the "cure" a Dr would suggest it at time of diagnosis.

I'm not aware of anyone on this thread claiming there is a cure for MS.

OP: I have 38 years of intimate knowledge of MS. I'm going to bow out of this thread now but pm me anytime. I'm thinking of you!

 

[Hikergirl]

Sending thoughts and prayers.

 

[anniemae]

About the same. Thanks for checking.

will you be going home soon? Have you received any answers? Do not answer if you don't feel comfortable making it public, I understand I am being intrusive, I just really feel for you and want you to be okay, no matter what the diagnosis is.

 

[Mizzoufan]

I'll be in for a few more days. I;m taking a high steroid through an IV. Then we will go from there, You ask any question you want. I don't mind.

 

[gwynne]

I'll be in for a few more days. I;m taking a high steroid through an IV. Then we will go from there, You ask any question you want. I don't mind.

Sending warm thoughts and a hug your way.

 

[kimblebee]

Good morning! I hope that the spinal headache is getting better. I don't have any experience with MS but I do with a spinal headache. Stay flat. Stay really flat and try not to get up unless you have to. I had a spinal tap and I got that headache even though I didn't move. I am a normal headache sufferer and since I have them more times than not, I didn't want one from the spinal tap. Happened anyway, darnit. I was in misery. Worst headache I have ever had. I lasted a week. I just drank lots of caffeine and stayed flat. That helped a bit and each day got better but it sucked. Sorry you are having to go through all of this and I hope that you can get the answers you need. (hugs)

I had knee surgery with an epidural about ten years ago. They had to puncture twice becuae the guy missed the first time. I ended up with a spinal headache and that was the most pain I've ever been in. Like you, I had to stay flat and was bedbound for about a week. The doctor explained that it was caused when a tiny bit of spinal fluid leaked out with one of the punctures. It puts the brain out of centre and the pain is the brain pushing on your skull, when it's not supposed to.

 

[Micca]

Just checking for a progress report, sorry about the darned headache. Take it easy & feel better soon.

 

[mousefanmichelle]

I had knee surgery with an epidural about ten years ago. They had to puncture twice becuae the guy missed the first time. I ended up with a spinal headache and that was the most pain I've ever been in. Like you, I had to stay flat and was bedbound for about a week. The doctor explained that it was caused when a tiny bit of spinal fluid leaked out with one of the punctures. It puts the brain out of centre and the pain is the brain pushing on your skull, when it's not supposed to.

Yep - that was exactly it. I had it done late Sunday night and tried to go to work the next day but I couldn't even be upright. I had to drive home kind of sidways until I could lay flat. Horrible, horrible, horrible. I had to have a week off work because of it. The main reason I went into the ER in the first place was because I had a headache so bad I thought someone was taking an ice pic to it and plunging it deep in my skull - to walk away with a worse headache is not something I will ever forget.

 

[minneylovesmicky]

I'm not aware of anyone on this thread claiming there is a cure for MS.!

Sorry, but maybe I should have written So called cure, as opposed to writing "cure", as I wrongly assumed everyone knew that when you put "...." around a word It means to take that word/term loosely.

Others were posting that diet has worked wonders, made relapses and active lesions lessen, studies for the same ect, basically stating, if you change your diet, your ms will practically/basically go away......i.e "cure".

I was just commenting that if that was true, doctors would mention it.

It just builds false hope, that all I have to do is eat really healthy and I will be ok. It is wrong.

 

[kimblebee]

How are you feeling tonight? Any news or updates?

 

[Pea-n-Me]

I have very little knowledge of MS, it is not my area of expertise. I do know a lot about complementary therapies and mind/body medicine, though.

Exactly, builds false hope. A person starts eating a "MS wonder diet" they suddenly become well again, thinks "oh wow it really works, have not had a relapse for xxx days/weeks/months".....who is to say the relapse wasn't on its way out and they would have had any more releases anyway? This disease is not predictable, your can not say "oh it is Wednesday i am due for a relapse, it just doesn't work that way.

Changing a diet for better health, overall, is great, but that is all, there is no cure for MS, lots of research but no cure, lots of new medications, but still no cure. I am sure if diet was the "cure" a Dr would suggest it at time of diagnosis.

Responding not just to this post, but to the previous conversation over the last couple of pages in re to diet.

I think there is a lot of room between, "Diet cures this" and "diet doesn't cure this", if you know what I mean. I think if someone is diagnosed with a devastating illness, that one of the things a person can control (in a situation where much isn't within their control), is their diet. So many people do find that improving their diet helps them, in general, because it makes them feel better to eat a certain way, in part because they're taking charge of at least how they respond to their disease. So not only is there nothing wrong with that, it's a good thing! Benefits could potentially come from feeling better overall and who's to say that doesn't help the disease state. So just speaking very, very generally about diet as one aspect of a therapeutic plan for someone's illness. There are certainly lots of other complementary therapies that can help, as well. (And note I am not talking about alternative therapies, there is a difference.)

I also have a lot of experience on these types of threads, being one of the originators of the long running breast cancer thread here, and I have to say, there has to be room for all opinions, really. All of us may not agree with all of the opinions offerered, but we have to be respectful that they are their opinions. If someone has a different idea, that's fine, offer it up, too, along with links that may be helpful, etc. But you'd hate to see a supportive thread like this one fall apart because people are fighting about opinions.

OP: I have 38 years of intimate knowledge of MS. I'm going to bow out of this thread now but pm me anytime. I'm thinking of you!

I really think you should reconsider if you have 38 years of intimate knowledge about this subject matter. You could potentially be very helpful here.

Sorry, don't mean to step on any toes or anything. Just wanted to offer up my thoughts in catching up in the thread. Mizzoufan, I hope things are going ok.

 

[BellaBaby]

Thoughts and prayers your way...hope you get good news.