Anyone have MS or know someone living with it?

hauntingfamiliar

I'm sending tons of good thoughts and positive vibes your way Ledvedder! I can't imagine what this must be like for you. That's so lousy to hear that the practice wouldn't give you a referral to the specialist due to what, office politics?? Wow. That's such a shame. I really hope you get some clarity soon on what's going on with you so you can start treatment. This waiting game sounds brutal.

ledvedderman

hauntingfamiliar said:

I'm sending tons of good thoughts and positive vibes your way Ledvedder! I can't imagine what this must be like for you. That's so lousy to hear that the practice wouldn't give you a referral to the specialist due to what, office politics?? Wow. That's such a shame. I really hope you get some clarity soon on what's going on with you so you can start treatment. This waiting game sounds brutal.

Office politics, indeed! I'm told it's so one doctor doesn't "steal" patients from another doctor in the same practice. It boggles my mind. Thank you very much for the kind words and support. You're very kind!

cutz

ledvedderman said:

hauntingfamiliar said:

I'm sending tons of good thoughts and positive vibes your way Ledvedder! I can't imagine what this must be like for you. That's so lousy to hear that the practice wouldn't give you a referral to the specialist due to what, office politics?? Wow. That's such a shame. I really hope you get some clarity soon on what's going on with you so you can start treatment. This waiting game sounds brutal.

Office politics, indeed! I'm told it's so one doctor doesn't "steal" patients from another doctor in the same practice. It boggles my mind. Thank you very much for the kind words and support. You're very kind!

I know this is what i did, when i wanted to find a different DR. then the one my Primary DR. sent me too, because i wasn't given a diagnosies confirmation that i got from another DR.(I spent my own money to see a DR. that told me what was wrong with me, after a year of not knowing what was wrong). All i got was , basically,  a "shrug of the shoulders and i don't  have a diagnosies for you". I too, as it turned out, have a condition that was difficult to determine.I pretty much demanded to my Primary DR. to see another specialist &  I was able to get a referral from my Primary DR.  to see a DR. that wasn't affiliated with the same Hospital as my Primary, and took my insurance.  I was able to get a confirmation what my condition was.

Just a friendly suggestion to do what i did: DEMAND to see that MS specialist. Your feelings & problems are more important then ANY Doctor out ther.

Good LUCK & all of the best to you.

ledvedderman

cutz said:

ledvedderman said:

hauntingfamiliar said:

I'm sending tons of good thoughts and positive vibes your way Ledvedder! I can't imagine what this must be like for you. That's so lousy to hear that the practice wouldn't give you a referral to the specialist due to what, office politics?? Wow. That's such a shame. I really hope you get some clarity soon on what's going on with you so you can start treatment. This waiting game sounds brutal.

Office politics, indeed! I'm told it's so one doctor doesn't "steal" patients from another doctor in the same practice. It boggles my mind. Thank you very much for the kind words and support. You're very kind!

I know this is what i did, when i wanted to find a different DR. then the one my Primary DR. sent me too, because i wasn't given a diagnosies confirmation that i got from another DR.(I spent my own money to see a DR. that told me what was wrong with me, after a year of not knowing what was wrong). All i got was , basically,  a "shrug of the shoulders and i don't  have a diagnosies for you". I too, as it turned out, have a condition that was difficult to determine.I pretty much demanded to my Primary DR. to see another specialist &  I was able to get a referral from my Primary DR.  to see a DR. that wasn't affiliated with the same Hospital as my Primary, and took my insurance.  I was able to get a confirmation what my condition was.

Just a friendly suggestion to do what i did: DEMAND to see that MS specialist. Your feelings & problems are more important then ANY Doctor out ther.

Good LUCK & all of the best to you.

Thanks very much. I am finally getting to the point of being very vocal about how I'm not getting answers. The last time I saw my primary doctor, he suggested a psycho semantic type of thing going on. At first I was quite offended. I asked how that is treated and he said I'd see the therapist I've seen for over 15 years. So that made me feel better. I then asked her about it and she immediately rejected the idea of this being psycho semantic. She's seen this evolve from a tremor over 4-5 years and seen it snowball in the last year or so. It felt like my doctor was taking the easy route out. But I see a new doctor this week...a good time to be more assertive. 

Shyner

My mom has MS. 
While she can't walk physically her spirit flies a million miles a day. 

Take care of the sick and find yourself flying a million miles a day. 

ledvedderman

Well, I think we are getting very close to a diagnosis. A couple of weeks ago I had a VEP done at my eye doctor which showed a damaged optic nerve in one eye. The eye doctor said it is a big red flag to a neurologist for MS. Today I had a brain MRI done and I think that's where the answers will lie. It's an odd feeling to be rooting for MS, but it's pretty much the only option on the table that isn't horrible. I can handle MS if I'm given treatment and a plan. My biggest fear is being told again that they aren't sure what's going on. They can't say it's all in my head anymore after the VEP results. It shows something is clearly wrong. Just not sure what it is. 

Shyner

My momma has ms. I'm with her now and forever. 
I cannot wait to heaven so i can see her run. 

Please don't die it hurts my stomach. 

oftenreading

ledvedderman said:

Well, I think we are getting very close to a diagnosis. A couple of weeks ago I had a VEP done at my eye doctor which showed a damaged optic nerve in one eye. The eye doctor said it is a big red flag to a neurologist for MS. Today I had a brain MRI done and I think that's where the answers will lie. It's an odd feeling to be rooting for MS, but it's pretty much the only option on the table that isn't horrible. I can handle MS if I'm given treatment and a plan. My biggest fear is being told again that they aren't sure what's going on. They can't say it's all in my head anymore after the VEP results. It shows something is clearly wrong. Just not sure what it is. 

I sure hope you get an answer, lvm, particularly one that leads to treatment options. You already know it isn't "nothing", so it makes total sense that you want to pin down the "something" so that your path becomes clearer. MS has some effective treatment options. Sending positive vibes your way. 

HughFreakingDillon

ledvedderman said:

cutz said:

ledvedderman said:

hauntingfamiliar said:

I'm sending tons of good thoughts and positive vibes your way Ledvedder! I can't imagine what this must be like for you. That's so lousy to hear that the practice wouldn't give you a referral to the specialist due to what, office politics?? Wow. That's such a shame. I really hope you get some clarity soon on what's going on with you so you can start treatment. This waiting game sounds brutal.

Office politics, indeed! I'm told it's so one doctor doesn't "steal" patients from another doctor in the same practice. It boggles my mind. Thank you very much for the kind words and support. You're very kind!

I know this is what i did, when i wanted to find a different DR. then the one my Primary DR. sent me too, because i wasn't given a diagnosies confirmation that i got from another DR.(I spent my own money to see a DR. that told me what was wrong with me, after a year of not knowing what was wrong). All i got was , basically,  a "shrug of the shoulders and i don't  have a diagnosies for you". I too, as it turned out, have a condition that was difficult to determine.I pretty much demanded to my Primary DR. to see another specialist &  I was able to get a referral from my Primary DR.  to see a DR. that wasn't affiliated with the same Hospital as my Primary, and took my insurance.  I was able to get a confirmation what my condition was.

Just a friendly suggestion to do what i did: DEMAND to see that MS specialist. Your feelings & problems are more important then ANY Doctor out ther.

Good LUCK & all of the best to you.

Thanks very much. I am finally getting to the point of being very vocal about how I'm not getting answers. The last time I saw my primary doctor, he suggested a psycho semantic type of thing going on. At first I was quite offended. I asked how that is treated and he said I'd see the therapist I've seen for over 15 years. So that made me feel better. I then asked her about it and she immediately rejected the idea of this being psycho semantic. She's seen this evolve from a tremor over 4-5 years and seen it snowball in the last year or so. It felt like my doctor was taking the easy route out. But I see a new doctor this week...a good time to be more assertive. 

my wife's sister had debilitating stomach pain for a LONG time; she was even on a morphine Rx for it. the doctors eventually gave her a hysterectomy,  but the pain stayed. Finally, after months of this going on, they put her on anti-depressants. Pain gone. 

I couldn't believe they did major surgery as a fucking guess. BEFORE going the mental route. 

it's "good" that your doc found something that made them know it isn't mental. good to see you are making progress. 

darwinspeed to you my friend. 

rgambs

ledvedderman said:

Well, I think we are getting very close to a diagnosis. A couple of weeks ago I had a VEP done at my eye doctor which showed a damaged optic nerve in one eye. The eye doctor said it is a big red flag to a neurologist for MS. Today I had a brain MRI done and I think that's where the answers will lie. It's an odd feeling to be rooting for MS, but it's pretty much the only option on the table that isn't horrible. I can handle MS if I'm given treatment and a plan. My biggest fear is being told again that they aren't sure what's going on. They can't say it's all in my head anymore after the VEP results. It shows something is clearly wrong. Just not sure what it is. 

Eye doctor for the win! 
My wife is an Optometrist.

I really hope your physicians get on the ball and get you some relief soon.  Hang in there!

Lizard

My older sister was diagnosed about 8 years ago... she has flareups... and like you, has not been definitively diagnosed.
All the best to you, LedVed

ledvedderman

rgambs said:

ledvedderman said:

Well, I think we are getting very close to a diagnosis. A couple of weeks ago I had a VEP done at my eye doctor which showed a damaged optic nerve in one eye. The eye doctor said it is a big red flag to a neurologist for MS. Today I had a brain MRI done and I think that's where the answers will lie. It's an odd feeling to be rooting for MS, but it's pretty much the only option on the table that isn't horrible. I can handle MS if I'm given treatment and a plan. My biggest fear is being told again that they aren't sure what's going on. They can't say it's all in my head anymore after the VEP results. It shows something is clearly wrong. Just not sure what it is. 

Eye doctor for the win! 
My wife is an Optometrist.

I really hope your physicians get on the ball and get you some relief soon.  Hang in there!

Ha! Good for your wife! I used to want to be an eye doctor. The eye doctor who told me of my VEP results actually bought his business from my grandpa, who taught him the business. So if I have to hear it from someone, who better than someone my grandpa groomed? Does your wife offer a VEP test? It used to be super expensive for offices, but it's apparently dropped in reverent years. Basically the amplitude in my left eye is about 40% of what the right eye is. The info that the eye sees isn't reaching the brain because the left optic nerve is damaged. I think I'm remembering that right, as to what is happening. 

Thank you all for the support and sharing of loved ones facing MS. It's nice to have an established support system in place. I hope someday any sort of info I have can help you guys out like your words have helped me. 

ledvedderman

Big week ahead of me. Friday is the day I've been dreading, yet begging to have happen, for 6 months now- a spinal tap. Good god. I cannot explain how nervous I am for that. 
Next week I'm going up to Mayo Clinic in Minnesota to be looked over. They're the best neurological department in the country. 
So, I'm not certain that MS will be the diagnosis. If it is, it's super early and aggressive. My spine, neck, and brain show no leisons. My smoking gun is going to come down to a couple of things that certainly are happening and proven on tests. The eye test that shows severe deterioration on the optic nerve from my left eye to the brain. The MRI shows no damage to the outside of the optic nerve, so this is where we get the "early and aggressive" belief. That eye test is used to catch things early on. Next, while I have no leisons on the brain, my white matter has significantly increased over the last two years. So, obviously something is going on in a negative way with the nervous system. About 4 years ago, I went to Mayo for an unrelated reason and after a MRI then, the doctor pointed out that I had more white matter than what someone my age would normally have. I didn't hear this, my mom did. But, no doctor followed up on it and my mom assumed I heard it. Needless to say when I told her a couple of months ago I'd never heard or talked to any doctor about white matter, she was shocked. God damnit. I feel like everyone involved (including me and my family) dropped the ball. What if we'd caught whatever this is super early? But, I can't think like that. It's not healthy. But I'm close to an answer. Very close. 

cutz

GOOD LUCK, on Friday.^^^^^

hauntingfamiliar

^ Don't beat yourself up about the what ifs!! Yes it is frustrating, but you can do nothing about that now. You can move forward like you have been and stay on the doctors and specialists until they find out exactly what is going on with you. You seem to be doing everything you can to get a diagnosis. I wish the very best to you and I really hope you get some answers soon. Then you can figure out your treatment. Positive waves going out to you. Hang in there and vent here anytime you need to!!!!!

hedonist

hauntingfamiliar said:

^ Don't beat yourself up about the what ifs!! Yes it is frustrating, but you can do nothing about that now. You can move forward like you have been and stay on the doctors and specialists until they find out exactly what is going on with you. You seem to be doing everything you can to get a diagnosis. I wish the very best to you and I really hope you get some answers soon. Then you can figure out your treatment. Positive waves going out to you. Hang in there and vent here anytime you need to!!!!!

I echo what this smart woman says.

HughFreakingDillon

good vibes from Winnipeg vedderman. 

oftenreading

ledvedderman said:

Big week ahead of me. Friday is the day I've been dreading, yet begging to have happen, for 6 months now- a spinal tap. Good god. I cannot explain how nervous I am for that. 
Next week I'm going up to Mayo Clinic in Minnesota to be looked over. They're the best neurological department in the country. 
So, I'm not certain that MS will be the diagnosis. If it is, it's super early and aggressive. My spine, neck, and brain show no leisons. My smoking gun is going to come down to a couple of things that certainly are happening and proven on tests. The eye test that shows severe deterioration on the optic nerve from my left eye to the brain. The MRI shows no damage to the outside of the optic nerve, so this is where we get the "early and aggressive" belief. That eye test is used to catch things early on. Next, while I have no leisons on the brain, my white matter has significantly increased over the last two years. So, obviously something is going on in a negative way with the nervous system. About 4 years ago, I went to Mayo for an unrelated reason and after a MRI then, the doctor pointed out that I had more white matter than what someone my age would normally have. I didn't hear this, my mom did. But, no doctor followed up on it and my mom assumed I heard it. Needless to say when I told her a couple of months ago I'd never heard or talked to any doctor about white matter, she was shocked. God damnit. I feel like everyone involved (including me and my family) dropped the ball. What if we'd caught whatever this is super early? But, I can't think like that. It's not healthy. But I'm close to an answer. Very close. 

Sending you positive vibes today as you have that spinal tap. I hope it brings you some answers and a way forward. 

ledvedderman

^ Thanks everybody. I'm nervous as hell, but it will be over before long now. 

jeffbr

Positive thoughts for a clearer diagnosis today. I hope, regardless of the diagnosis, that you will be given a good course of treatment. Most importantly I hope that the burden and stress of uncertainty starts disappearing as you get a clearer picture of the underlying issues. Stay strong!