update on MS

update on MS

Joined: January 27th, 2003, 11:09 pm

November 19th, 2011, 1:18 pm #1

I met with the local neurologist yesterday afternoon. I liked him a lot, but he did not give me the news I'd hoped for. There's one nonspecific something on my brain. That in and of itself doesn't mean much of anything. However, there is also something on my spine, and possibly one other one. He would like me to get another MRI of the thoraccic spine. While there are a number of benign things it could be on the brain, there are much fewer possibilities when it comes to the spine. He said he cannot give a diagnosis of MS based on the info we've got, but that it's looking about 90% likely to be that. I'll need to get a spinal tap, which must be done by a radiologist because of my spinal stenosis, and there is a eye test that measures the nerves in the eye. These two he said I could get at Johns Hopkins when I go there next month. He also ordered a chest x-ray and some more bloodwork. I'll see the Johns Hopkins doc later in December and follow up with my Delaware doc in January. Once we get the official diagnosis, we can begin treatment. He said there are eight different drugs to treat MS now and more in the pipeline, and that their ability to suppress the disease has improved dramatically in recent decades. He encouraged me to keep up with all the exercise I do and he said that hot baths and hot showers are okay. It won't worsen the disease, only the symptoms (temporarily). He said that I am youngish, white, a woman, and my only symptom is sensory right now, so all of that is in my favor. I'm not happy about the situation, but not devastated. I'm too busy to let myself stay down.

He also is scheduling an appointment with a neurosurgeon, because of the severe spinal stenosis. I'm probably looking at back surgery sometime in the hopefully distant future. The back pain sucks, but I can manage it. However, there's been significant nerve damage, and if that's continuing to worsen, well, I don't know how long I should just let that go on. I sooooo don't want back surgery though.

xoxoxo
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Joined: February 16th, 2006, 1:10 am

November 19th, 2011, 5:35 pm #2

I was hoping you would get different news. Glad you are getting answers though because not knowing can drive a person crazy. I'm very happy to hear that you are able to stay positive and be so brave. I'm sure all your past experience with medical issues is helping you navigate through all of this and although I'm sure you are grateful for the knowledge, bet you would rather skip these life learning experiences, huh? Wish I could make that happen for you.

Completely understand why back surgery is scary. I skipped spine surgery for my neck issues, but if things had been different I would have done it. If my kids were all in school and could manage more on their own, I would have finished it 2yrs ago. Now it looms over my head and I fear another relapse and more nerve damage,too. So consider that there will never be a good time, but now/after holidays may be exactly the time when you can manage the surgery without too much chaos.

On a side note, the first confession story is HILARIOUS!!! DH wants to know if Father slapped back. We aren't starting catechism until next year because DS is in K again... plus afraid our complete neglect of attending mass will be exposed.

Sending hugs to you.




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Joined: September 4th, 2004, 1:08 am

November 19th, 2011, 7:03 pm #3

I met with the local neurologist yesterday afternoon. I liked him a lot, but he did not give me the news I'd hoped for. There's one nonspecific something on my brain. That in and of itself doesn't mean much of anything. However, there is also something on my spine, and possibly one other one. He would like me to get another MRI of the thoraccic spine. While there are a number of benign things it could be on the brain, there are much fewer possibilities when it comes to the spine. He said he cannot give a diagnosis of MS based on the info we've got, but that it's looking about 90% likely to be that. I'll need to get a spinal tap, which must be done by a radiologist because of my spinal stenosis, and there is a eye test that measures the nerves in the eye. These two he said I could get at Johns Hopkins when I go there next month. He also ordered a chest x-ray and some more bloodwork. I'll see the Johns Hopkins doc later in December and follow up with my Delaware doc in January. Once we get the official diagnosis, we can begin treatment. He said there are eight different drugs to treat MS now and more in the pipeline, and that their ability to suppress the disease has improved dramatically in recent decades. He encouraged me to keep up with all the exercise I do and he said that hot baths and hot showers are okay. It won't worsen the disease, only the symptoms (temporarily). He said that I am youngish, white, a woman, and my only symptom is sensory right now, so all of that is in my favor. I'm not happy about the situation, but not devastated. I'm too busy to let myself stay down.

He also is scheduling an appointment with a neurosurgeon, because of the severe spinal stenosis. I'm probably looking at back surgery sometime in the hopefully distant future. The back pain sucks, but I can manage it. However, there's been significant nerve damage, and if that's continuing to worsen, well, I don't know how long I should just let that go on. I sooooo don't want back surgery though.

xoxoxo
I am sorry to hear all this. The lesions on the spine, can they be related to MS? I know you feel the future is uncertain but he is right about how your symptoms are starting and the likelihood you are looking at a slowly progressive disease. That combined with all the new medications now, you will be a better place that many were 10 years ago. I also have seen many women in my derm office and surprised when I see that they have MS on their history forms, you would never know it. Research has come a long way, thank goodness. We are here for you, even to just listen if you need to vent. Many many hugs!!
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Joined: June 20th, 2006, 2:07 am

November 19th, 2011, 7:05 pm #4

I met with the local neurologist yesterday afternoon. I liked him a lot, but he did not give me the news I'd hoped for. There's one nonspecific something on my brain. That in and of itself doesn't mean much of anything. However, there is also something on my spine, and possibly one other one. He would like me to get another MRI of the thoraccic spine. While there are a number of benign things it could be on the brain, there are much fewer possibilities when it comes to the spine. He said he cannot give a diagnosis of MS based on the info we've got, but that it's looking about 90% likely to be that. I'll need to get a spinal tap, which must be done by a radiologist because of my spinal stenosis, and there is a eye test that measures the nerves in the eye. These two he said I could get at Johns Hopkins when I go there next month. He also ordered a chest x-ray and some more bloodwork. I'll see the Johns Hopkins doc later in December and follow up with my Delaware doc in January. Once we get the official diagnosis, we can begin treatment. He said there are eight different drugs to treat MS now and more in the pipeline, and that their ability to suppress the disease has improved dramatically in recent decades. He encouraged me to keep up with all the exercise I do and he said that hot baths and hot showers are okay. It won't worsen the disease, only the symptoms (temporarily). He said that I am youngish, white, a woman, and my only symptom is sensory right now, so all of that is in my favor. I'm not happy about the situation, but not devastated. I'm too busy to let myself stay down.

He also is scheduling an appointment with a neurosurgeon, because of the severe spinal stenosis. I'm probably looking at back surgery sometime in the hopefully distant future. The back pain sucks, but I can manage it. However, there's been significant nerve damage, and if that's continuing to worsen, well, I don't know how long I should just let that go on. I sooooo don't want back surgery though.

xoxoxo
I too was hoping for different news, I am so sorry. I love how strong your voice is, how "grabbing the bull by it's horns" you sound.

I thought I had read that MS can be alleviated by some neck/artery surgery, done in Italy or something. I'd have to look it up to sound intelligent on this. BUT thinking along those lines, if you had the back surgery, maybe it would help the MS too, allowing more blood flow and less nerve damage?
I just know so little on this so I am sorry if this isn't even close to what would help.

Big hugs and love,
Julie


me:42, DH 43
FSH 26
DS: born by c-sec Apr15'03, 9lbs5oz 41wks gest. (after 4 years of ttc, starting in 1998)
DD born by c-sec Oct 13 2007, 8lbs13oz 39wk gest. (after just under 3 years of ttc)
~~DS was conceived naturally the cycle following a cancelled DE IVF, using my good friend's eggs. She was on the verge of hyperstimming.
~~DD's nat conception I attribute to using OPKs like a crazy nut, eating grapefruit daily and using preseed. also 5 cycles of TCM ending 2 cycles before that lucky cycle.
~~~~~~~~~~~~~~~~~~~~~~
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Joined: February 20th, 2006, 11:35 pm

November 19th, 2011, 7:50 pm #5

I met with the local neurologist yesterday afternoon. I liked him a lot, but he did not give me the news I'd hoped for. There's one nonspecific something on my brain. That in and of itself doesn't mean much of anything. However, there is also something on my spine, and possibly one other one. He would like me to get another MRI of the thoraccic spine. While there are a number of benign things it could be on the brain, there are much fewer possibilities when it comes to the spine. He said he cannot give a diagnosis of MS based on the info we've got, but that it's looking about 90% likely to be that. I'll need to get a spinal tap, which must be done by a radiologist because of my spinal stenosis, and there is a eye test that measures the nerves in the eye. These two he said I could get at Johns Hopkins when I go there next month. He also ordered a chest x-ray and some more bloodwork. I'll see the Johns Hopkins doc later in December and follow up with my Delaware doc in January. Once we get the official diagnosis, we can begin treatment. He said there are eight different drugs to treat MS now and more in the pipeline, and that their ability to suppress the disease has improved dramatically in recent decades. He encouraged me to keep up with all the exercise I do and he said that hot baths and hot showers are okay. It won't worsen the disease, only the symptoms (temporarily). He said that I am youngish, white, a woman, and my only symptom is sensory right now, so all of that is in my favor. I'm not happy about the situation, but not devastated. I'm too busy to let myself stay down.

He also is scheduling an appointment with a neurosurgeon, because of the severe spinal stenosis. I'm probably looking at back surgery sometime in the hopefully distant future. The back pain sucks, but I can manage it. However, there's been significant nerve damage, and if that's continuing to worsen, well, I don't know how long I should just let that go on. I sooooo don't want back surgery though.

xoxoxo
Well that does s@ck, doesn't it. It's not fun at all to worry about health, and having to go to all those appointments when you're probably so overwhelmed taking care of other things (like 4 kids!!), well that just adds to the stress. I am glad to hear that there are a number of things on your side and I really hope things stay that way. Thank goodness you are close to such excellent health care. And it's good news about the medications available to help suppress the MS if you get diagnosed with it.

Re: the spinal stenosis, my MIL had a terrible case 8 years ago; she was bed ridden and in tears. I've never seen her like that before. She did have surgery and it really has helped. She's pretty much back to normal. I hope you don't need it, but if you do, know that it can help. (Getting the right surgeon is key.)

Big hugs and sending good vibes your way.

xoxox
Lillian

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Joined: March 12th, 2008, 1:22 pm

November 19th, 2011, 8:00 pm #6

I met with the local neurologist yesterday afternoon. I liked him a lot, but he did not give me the news I'd hoped for. There's one nonspecific something on my brain. That in and of itself doesn't mean much of anything. However, there is also something on my spine, and possibly one other one. He would like me to get another MRI of the thoraccic spine. While there are a number of benign things it could be on the brain, there are much fewer possibilities when it comes to the spine. He said he cannot give a diagnosis of MS based on the info we've got, but that it's looking about 90% likely to be that. I'll need to get a spinal tap, which must be done by a radiologist because of my spinal stenosis, and there is a eye test that measures the nerves in the eye. These two he said I could get at Johns Hopkins when I go there next month. He also ordered a chest x-ray and some more bloodwork. I'll see the Johns Hopkins doc later in December and follow up with my Delaware doc in January. Once we get the official diagnosis, we can begin treatment. He said there are eight different drugs to treat MS now and more in the pipeline, and that their ability to suppress the disease has improved dramatically in recent decades. He encouraged me to keep up with all the exercise I do and he said that hot baths and hot showers are okay. It won't worsen the disease, only the symptoms (temporarily). He said that I am youngish, white, a woman, and my only symptom is sensory right now, so all of that is in my favor. I'm not happy about the situation, but not devastated. I'm too busy to let myself stay down.

He also is scheduling an appointment with a neurosurgeon, because of the severe spinal stenosis. I'm probably looking at back surgery sometime in the hopefully distant future. The back pain sucks, but I can manage it. However, there's been significant nerve damage, and if that's continuing to worsen, well, I don't know how long I should just let that go on. I sooooo don't want back surgery though.

xoxoxo
...despite the things in your favor, which I was very happy to hear about as I'm sure you were too, I would much rather the doctor had said, "Nope, sorry, I was mistaken -- no MS here. You're just overtired!" or somesuch.

It sounds as though you have a good attitude, a good plan of action, good tools to fight this, and good medical care -- and for that I am grateful -- but I do wish it was nothing (as I'm sure you and DH do, too).

I wish I had some better words of wisdom or encouragement. But all I have are virtual hugs, actual prayers, a willing ear to listen and strong shoulders for you to lean if and when you need.

xoxox,
k.
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Joined: July 28th, 2007, 9:23 pm

November 19th, 2011, 9:26 pm #7

I met with the local neurologist yesterday afternoon. I liked him a lot, but he did not give me the news I'd hoped for. There's one nonspecific something on my brain. That in and of itself doesn't mean much of anything. However, there is also something on my spine, and possibly one other one. He would like me to get another MRI of the thoraccic spine. While there are a number of benign things it could be on the brain, there are much fewer possibilities when it comes to the spine. He said he cannot give a diagnosis of MS based on the info we've got, but that it's looking about 90% likely to be that. I'll need to get a spinal tap, which must be done by a radiologist because of my spinal stenosis, and there is a eye test that measures the nerves in the eye. These two he said I could get at Johns Hopkins when I go there next month. He also ordered a chest x-ray and some more bloodwork. I'll see the Johns Hopkins doc later in December and follow up with my Delaware doc in January. Once we get the official diagnosis, we can begin treatment. He said there are eight different drugs to treat MS now and more in the pipeline, and that their ability to suppress the disease has improved dramatically in recent decades. He encouraged me to keep up with all the exercise I do and he said that hot baths and hot showers are okay. It won't worsen the disease, only the symptoms (temporarily). He said that I am youngish, white, a woman, and my only symptom is sensory right now, so all of that is in my favor. I'm not happy about the situation, but not devastated. I'm too busy to let myself stay down.

He also is scheduling an appointment with a neurosurgeon, because of the severe spinal stenosis. I'm probably looking at back surgery sometime in the hopefully distant future. The back pain sucks, but I can manage it. However, there's been significant nerve damage, and if that's continuing to worsen, well, I don't know how long I should just let that go on. I sooooo don't want back surgery though.

xoxoxo
That is sure a lot to process. I am so sorry that you are going through all of this. Sure doesn't seem fair. Sure seems like life is putting a whole lot on your plate. I am so sorry.

I'm thinking about you and crossing my fingers for you. Big hugs.

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Joined: December 2nd, 2005, 3:49 pm

November 19th, 2011, 11:28 pm #8

I met with the local neurologist yesterday afternoon. I liked him a lot, but he did not give me the news I'd hoped for. There's one nonspecific something on my brain. That in and of itself doesn't mean much of anything. However, there is also something on my spine, and possibly one other one. He would like me to get another MRI of the thoraccic spine. While there are a number of benign things it could be on the brain, there are much fewer possibilities when it comes to the spine. He said he cannot give a diagnosis of MS based on the info we've got, but that it's looking about 90% likely to be that. I'll need to get a spinal tap, which must be done by a radiologist because of my spinal stenosis, and there is a eye test that measures the nerves in the eye. These two he said I could get at Johns Hopkins when I go there next month. He also ordered a chest x-ray and some more bloodwork. I'll see the Johns Hopkins doc later in December and follow up with my Delaware doc in January. Once we get the official diagnosis, we can begin treatment. He said there are eight different drugs to treat MS now and more in the pipeline, and that their ability to suppress the disease has improved dramatically in recent decades. He encouraged me to keep up with all the exercise I do and he said that hot baths and hot showers are okay. It won't worsen the disease, only the symptoms (temporarily). He said that I am youngish, white, a woman, and my only symptom is sensory right now, so all of that is in my favor. I'm not happy about the situation, but not devastated. I'm too busy to let myself stay down.

He also is scheduling an appointment with a neurosurgeon, because of the severe spinal stenosis. I'm probably looking at back surgery sometime in the hopefully distant future. The back pain sucks, but I can manage it. However, there's been significant nerve damage, and if that's continuing to worsen, well, I don't know how long I should just let that go on. I sooooo don't want back surgery though.

xoxoxo
I have been wondering how you were doing. I'm sorry to hear that it looks like MS but glad that you have a positive attitude about it. I have a few friends with MS and they have been doing well for a long time. Hang in there and keep us posted.
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Joined: October 15th, 2004, 5:32 am

November 20th, 2011, 5:32 am #9

I met with the local neurologist yesterday afternoon. I liked him a lot, but he did not give me the news I'd hoped for. There's one nonspecific something on my brain. That in and of itself doesn't mean much of anything. However, there is also something on my spine, and possibly one other one. He would like me to get another MRI of the thoraccic spine. While there are a number of benign things it could be on the brain, there are much fewer possibilities when it comes to the spine. He said he cannot give a diagnosis of MS based on the info we've got, but that it's looking about 90% likely to be that. I'll need to get a spinal tap, which must be done by a radiologist because of my spinal stenosis, and there is a eye test that measures the nerves in the eye. These two he said I could get at Johns Hopkins when I go there next month. He also ordered a chest x-ray and some more bloodwork. I'll see the Johns Hopkins doc later in December and follow up with my Delaware doc in January. Once we get the official diagnosis, we can begin treatment. He said there are eight different drugs to treat MS now and more in the pipeline, and that their ability to suppress the disease has improved dramatically in recent decades. He encouraged me to keep up with all the exercise I do and he said that hot baths and hot showers are okay. It won't worsen the disease, only the symptoms (temporarily). He said that I am youngish, white, a woman, and my only symptom is sensory right now, so all of that is in my favor. I'm not happy about the situation, but not devastated. I'm too busy to let myself stay down.

He also is scheduling an appointment with a neurosurgeon, because of the severe spinal stenosis. I'm probably looking at back surgery sometime in the hopefully distant future. The back pain sucks, but I can manage it. However, there's been significant nerve damage, and if that's continuing to worsen, well, I don't know how long I should just let that go on. I sooooo don't want back surgery though.

xoxoxo
I am certain that your kids are going to make it easy for you to stay strong about whatever may be ahead medically for you. Honey, I know you will make it through. The most positive thing the doctor seemed to tell you is that the drug treatment is promising. I am sending you good vibes from all the way over here on the west coast, and I hope you feel them in those weak moments. Stay busy!!! Love you,

serasera
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Joined: February 10th, 2009, 9:24 pm

November 20th, 2011, 6:55 am #10

I met with the local neurologist yesterday afternoon. I liked him a lot, but he did not give me the news I'd hoped for. There's one nonspecific something on my brain. That in and of itself doesn't mean much of anything. However, there is also something on my spine, and possibly one other one. He would like me to get another MRI of the thoraccic spine. While there are a number of benign things it could be on the brain, there are much fewer possibilities when it comes to the spine. He said he cannot give a diagnosis of MS based on the info we've got, but that it's looking about 90% likely to be that. I'll need to get a spinal tap, which must be done by a radiologist because of my spinal stenosis, and there is a eye test that measures the nerves in the eye. These two he said I could get at Johns Hopkins when I go there next month. He also ordered a chest x-ray and some more bloodwork. I'll see the Johns Hopkins doc later in December and follow up with my Delaware doc in January. Once we get the official diagnosis, we can begin treatment. He said there are eight different drugs to treat MS now and more in the pipeline, and that their ability to suppress the disease has improved dramatically in recent decades. He encouraged me to keep up with all the exercise I do and he said that hot baths and hot showers are okay. It won't worsen the disease, only the symptoms (temporarily). He said that I am youngish, white, a woman, and my only symptom is sensory right now, so all of that is in my favor. I'm not happy about the situation, but not devastated. I'm too busy to let myself stay down.

He also is scheduling an appointment with a neurosurgeon, because of the severe spinal stenosis. I'm probably looking at back surgery sometime in the hopefully distant future. The back pain sucks, but I can manage it. However, there's been significant nerve damage, and if that's continuing to worsen, well, I don't know how long I should just let that go on. I sooooo don't want back surgery though.

xoxoxo
I am so sorry to hear your news. I still remain optimistic that the doctors are wrong and you turn out to be in the 10% that this is not MS. I do know first hand through a woman that I used to work with that MS is very treatable these days. She has had it for years and for the most part lives the same life as everyone else, and when she has a flareup she gets some injections and takes some steroids and seems to always pull out of it without long term repercussions.

I wish there was more I could do to support you. Please know that my thoughts are with you. Wish I could meet you and give you a real hug in person.

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