topic Re: Multiple Sclerosis diagnosis in Community Chat

Multiple Sclerosis diagnosis

pjoy — Sun, 31 Aug 2014 22:21:35 GMT

After three MRIs last week my doctor believes I have M.S. She will do a spinal tap on Tuesday to make a more firm diagnosis. Wondering if anyone here has experience with M.S. and can recommend helpful resources, advice, etc.

Re: Multiple Sclerosis diagnosis

brii — Sun, 31 Aug 2014 22:27:49 GMT

I have no knowledge of MS but I am wishing you well. (((Pjoy)))

Re: Multiple Sclerosis diagnosis

voyager1980 — Sun, 31 Aug 2014 22:29:48 GMT

((((((((((Pjoy))))))))))) Prayers & good wishes.I don't have helpful info but please post a thread in the Health forum too.

Re: Multiple Sclerosis diagnosis

Cakers1 — Sun, 31 Aug 2014 22:30:35 GMT

Re: Multiple Sclerosis diagnosis

4Kicks — Sun, 31 Aug 2014 22:36:07 GMT

I will say a prayer for you, and am somewhat surprised that your physician brought this condition up without a definite diagnosis. Knowledge is power, and having gone through several medical semi-catastrophes with my DH, I can tell you that it is a blessing to have the internet to find out information quickly when necessary. Doctors can be extremely helpful, but there is no one you can depend upon except for yourself to care as much as YOU about your own health care. Doctors and their staff have many, many patients to deal with.

Again, I will say a prayer for you. Knowledge is power, and you need to be in charge of your own medical care. If you cannot, I hope you have someone close to you who can help you out. Take care.

Re: Multiple Sclerosis diagnosis

kittymomNC — Sun, 31 Aug 2014 22:38:06 GMT

I'm sorry you are facing this diagnosis - I know it must be scary. I have no advice for you--I just wanted to tell you that my sister has had M.S. for over 25 years. It is a very slow progressing kind, and she started a walking exercise program as soon as she was diagnosed. She continued her job as a teacher and retired a few years ago, and is still doing well. She has a problem with one leg, but walks without help, etc. I just thought it might help to know that there are varying degrees of this disease, and maybe you can be hopeful that if it does turn out that you have it, it may not be as bad as you might expect.

Wishing you well...

Re: Multiple Sclerosis diagnosis

croemer — Sun, 31 Aug 2014 23:14:49 GMT

Sorry you are facing this diagnosis, hope all goes well. I bet you will get some good advice from some knowledgeable posters.

Re: Multiple Sclerosis diagnosis

pjoy — Sun, 31 Aug 2014 23:25:08 GMT

Thanks for the well wishes. I'm not really surprised by this possibility, as it's popped up in symptom searches for the past couple of years. I just dismissed it in the past and even when I had numerous symptoms pop up at the same time a couple weeks ago MS didn't even cross my mind.

kittymom, thanks for telling me about your sister! Those types of stories always help to alleviate some of the fear, and I've come across quite a few since last week.

I am not that worried, but don't like having to wait for more definitive information. Trying to "get smart" just in case! And going with my gut. :-)

Re: Multiple Sclerosis diagnosis

croemer — Sun, 31 Aug 2014 23:26:55 GMT

I can imagine pjoy...hoping you are fine and prayers to you.

Re: Multiple Sclerosis diagnosis

HiLo — Mon, 01 Sep 2014 01:05:36 GMT

My long post just got poofed. Good advice to make sure of the diagnois; both my daughter and niece were wrongly diagnosed and that has been 27 for one and 13 years for the other.

My brother has lived with M.S. for almost 25 years now. He has done quite well; drives on many long trips a year and walks with a cane. His advice to you would be to avoid stress as much as possible and to get a lot of exercise. I would also add seeing a good nutritionist who will recommend the right diet with supplements to build up your immune system. It is said that a compromised immune system is the cause for many of our illnesses.

I would definitely agree with Kicks (above) and heed her advice. I would go to the top for a certain diagnosis if at all possible even if such help is not located nearby. I have learned not to depend on local doctors as the source of absolute truth these days. Going to one of the 5 best hospitals in the country is the way I would go but if that is not possible, at least find a good teaching hospital somewhere. These hospitals also know the latest in treatments that have been life savers for me in the past.

The best advice we can give you is to take your health into your own hands and keep informed.; you are the one who knows your body best.

Try not to jump ahead in you imagination, pjoy. The cases of M.S that are usually publicized are generally the worse. Many are not that debilitating but please do get the best possible advice.

God bless and keep us informed.

HiLo

Re: Multiple Sclerosis diagnosis

irishmama5 — Mon, 01 Sep 2014 03:48:15 GMT

If your on FB there are very good informative sites one would be overcoming MS. There are FB groups that explain everything from holistic to traditional approches. GOOD LUCK ALSO like others have said wait for positive diagnosis

Re: Multiple Sclerosis diagnosis

ROMARY — Mon, 01 Sep 2014 04:02:44 GMT

I believe MS and also Parkinson's are difficult to accurately diagnose. Or at least they were, a few years ago. Anyway, try to get a firm diagnosis, if possible. And take care of yourself, as others have mentioned. Hopefully, all is well.

Re: Multiple Sclerosis diagnosis

hyacinth bucket1 — Mon, 01 Sep 2014 08:27:37 GMT

I was diagnosed with MS in 1998. The National Multiple Sclerosis Society is a great resource for information.

Re: Multiple Sclerosis diagnosis

hopeQ1 — Mon, 01 Sep 2014 09:07:05 GMT

I am sorry that this might be a probable diagnosis after Tuesday's tests. I must suggest that you get all of your education from sources outside of these forums. Sadly, often many posters here feel the need to state things that won't be beneficial or uplifting if you do have it. But there are many great websites where you can obtain good information.

Prays are with you.

Re: Multiple Sclerosis diagnosis

Yahooey — Mon, 01 Sep 2014 10:41:15 GMT

I have no advice but wanted to send you good thoughts and prayers.

Re: Multiple Sclerosis diagnosis

glb613 — Mon, 01 Sep 2014 11:06:44 GMT

On 8/31/2014 HiLo said:
My long post just got poofed. Good advice to make sure of the diagnois; both my daughter and niece were wrongly diagnosed and that has been 27 for one and 13 years for the other.

My brother has lived with M.S. for almost 25 years now. He has done quite well; drives on many long trips a year and walks with a cane. His advice to you would be to avoid stress as much as possible and to get a lot of exercise. I would also add seeing a good nutritionist who will recommend the right diet with supplements to build up your immune system. It is said that a compromised immune system is the cause for many of our illnesses.

I would definitely agree with Kicks (above) and heed her advice. I would go to the top for a certain diagnosis if at all possible even if such help is not located nearby. I have learned not to depend on local doctors as the source of absolute truth these days. Going to one of the 5 best hospitals in the country is the way I would go but if that is not possible, at least find a good teaching hospital somewhere. These hospitals also know the latest in treatments that have been life savers for me in the past.

The best advice we can give you is to take your health into your own hands and keep informed.; you are the one who knows your body best.

Try not to jump ahead in you imagination, pjoy. The cases of M.S that are usually publicized are generally the worse. Many are not that debilitating but please do get the best possible advice.

God bless and keep us informed.

HiLo

Are you kidding? Her immune system is what's attacking her nervous system.

"In MS, an abnormal immune-mediated response attacks the myelin coating around nerve fibers in the central nervous system, as well as the nerve fibers themselves. In recent years, researchers have been able to identify which immune cells are mounting the attack, some of the factors that cause them to attack, and some of the sites (receptors) on the attacking cells that appear to be attracted to the myelin to begin the destructive process. Ongoing efforts to learn more about the immune-mediated process in MS — what sets it in motion, how it works, and how to slow or stop it — are bringing us closer to understanding the cause of MS."

Re: Multiple Sclerosis diagnosis

Thrive — Mon, 01 Sep 2014 12:10:33 GMT

Hello,

I am sorry about the possible diagnoses of MS. I was diagnosed with MS 12 years ago. I went to three neurologist and was finally diagnosed at Hopkins. I was unable to tolerate the spinal taps and those that tried weren't too good at it. The doctor at Hopkins was able to diagnose and provide treatment without the spinal tap. The National MS Society is the first place that I would start. Once you start a medication, there are seminars provided by them. They provide a wealth of information. You may also meet new people at the seminars who you can relate with. In addition, there are several websites that you can visit that offer forums ie: MS World, MSAA, Jooly's Joint , and etc. If you google MS forums, you will find many more. I know that it is scary. However, I am doing great after 12 years. I still do the things that I love. I just have to rest more. If you would like to talk more, please let me know. I will answer any questions that I can.

Best Wishes!

Re: Multiple Sclerosis diagnosis

Thrive — Mon, 01 Sep 2014 12:18:36 GMT

Hello,

Best Wishes!

Re: Multiple Sclerosis diagnosis

Marp2 — Mon, 01 Sep 2014 14:22:45 GMT

On 9/1/2014 glb613 said:
On 8/31/2014 HiLo said:
My long post just got poofed. Good advice to make sure of the diagnois; both my daughter and niece were wrongly diagnosed and that has been 27 for one and 13 years for the other.

My brother has lived with M.S. for almost 25 years now. He has done quite well; drives on many long trips a year and walks with a cane. His advice to you would be to avoid stress as much as possible and to get a lot of exercise. I would also add seeing a good nutritionist who will recommend the right diet with supplements to build up your immune system. It is said that a compromised immune system is the cause for many of our illnesses.

I would definitely agree with Kicks (above) and heed her advice. I would go to the top for a certain diagnosis if at all possible even if such help is not located nearby. I have learned not to depend on local doctors as the source of absolute truth these days. Going to one of the 5 best hospitals in the country is the way I would go but if that is not possible, at least find a good teaching hospital somewhere. These hospitals also know the latest in treatments that have been life savers for me in the past.

The best advice we can give you is to take your health into your own hands and keep informed.; you are the one who knows your body best.

Try not to jump ahead in you imagination, pjoy. The cases of M.S that are usually publicized are generally the worse. Many are not that debilitating but please do get the best possible advice.

God bless and keep us informed.

HiLo

Are you kidding? Her immune system is what's attacking her nervous system.

"In MS, an abnormal immune-mediated response attacks the myelin coating around nerve fibers in the central nervous system, as well as the nerve fibers themselves. In recent years, researchers have been able to identify which immune cells are mounting the attack, some of the factors that cause them to attack, and some of the sites (receptors) on the attacking cells that appear to be attracted to the myelin to begin the destructive process. Ongoing efforts to learn more about the immune-mediated process in MS — what sets it in motion, how it works, and how to slow or stop it — are bringing us closer to understanding the cause of MS."

Are you kidding? Both my SIL and nephew have MS and one of the very first things their respective specialists did was refer them for nutritional counseling.

Re: Multiple Sclerosis diagnosis

pjoy — Mon, 01 Sep 2014 14:51:25 GMT

Furry, if you don't mind me asking... Why are spinal taps a problem for you?