Anyone have MS or know someone living with it?

ledvedderman

So I'm not writing this for sympathy or warm feelings being sent my way. I know everyone here does that for one another because we're good people. It is looking very likely that I have MS. I'm not going to Google search anything on it until some time after it's confirmed. I think that if I did that, a) I'd convince myself further that I have it or b) I'd convince myself that I was dying. What I am looking for though are first hand experiences with either yourself or someone you care about. The one thing I did Google was, "Is MS fatal?". Luckily it came back very favorably for me there.
So, any words of wisdom?

jeffbr

Good luck with the diagnosis. Diagnosis usually happens after the process of elimination. My mom and my wife both have MS. Both are in remission. My mom unfortunately also now has Alzheimers, which took a long time to diagnose because they kept thinking it was cognitive issues related to MS. Anyway, stay positive. MS is not a death sentence, and there are many, many people with MS who live normal, productive lives. My wife used to do regular Interferon injections, but her MS went into remission years ago, and while she has an occasional bad day (temporary loss of some motor skills, fatigue) she lives a relatively normal life and many of her peers, co-workers and acquaintances don't even know she has MS.

markymark550

My stepsister has MS. I'm not particularly close with her so I don't know much about how it's affecting her every day life. After doing some research, she took up running because she found a few studies that show exercise helps with dealing with the symptoms and might even slow its progression. Stay positive and even though you aren't looking for good vibes, I'll still send them your way.

ledvedderman

Thanks, man. First of all, I'm sorry about your wife and mother's diagnosis with the disease and then for your mom having Alzheimers on top of it.
I'm going through the process of elimination right now actually. I take lithium for bipolar disorder and for years we took things like a bad tremor and cognitive impairment as a common reaction to lithium. But then some other symptoms started showing up in early 2016 that had me scratching my head. Things like a stutter, spasms, a change in vision, etc...those cannot be traced back to lithium. I have white matter on my brain which is a sign of degenerative issues going on and is often seen in people with MS.
Reading about your loved ones being in remission is great. I didn't even know remission was a thing. Like I said, I've avoided researching MS, so I apologize if that sounds ignorant. I go back to the neurologist in about 3 weeks and I'm fully expecting to be stabbed in the spine with a needle.

jeffbr

I hope you get good news, or at least solid news that you can work with from your neurologist. I believe relapsing-remitting MS (RRMS) is the most common type of MS, and usually starts in your 20s - 30s. Vision issues, numbness/tingling in extremities, dizziness, fatigue, and sensitivity to heat are things that my wife experiences from time to time (the relapse part), but as I mentioned it goes into remission for months at a time and during that time, aside from fatigue, we really don't think about her MS much at all. When she does relapse we just make sure she takes it easy for a couple/few days and don't get overly stressed about it, since so far these relapses have been pretty short-lived. This could change as she gets older, but for now it is pretty manageable. If you do end up getting diagnosed with MS, you'll find that there is a huge MS community out there. There is a ton of support, lots of literature and information, and of course the National MS Society. I do the Walk MS every year to help raise money, and it is a good chance to meet others with MS, get inspired, get info (they have lots of booths with info and medical professionals), and feel like you aren't alone. Also, breakthroughs continue to happen, and things are rapidly changing for the better in terms of treatment and prognosis. So if you do end up with that diagnosis, don't despair!

Cliffy6745

First, I'm sorry about your potential diagnosis. Health related issues like this are never easy and I wish you the best.

I worked in pharma in MS for 5 years or so up until a couple years ago. I have met a ton of patients who live perfectly normal lives. As Jeff said the communities are incredibly strong and there is a ton of support out there. There is also a ton of innovation with treatment going from interferons to now there are pills taken once or twice daily. Every treatment has unique efficacy and safety profiles so I won't give any advice there but be open and talk to your doctor about what is best for you, if this does ultimately get diagnosed. I think you'll be pretty inspired by the MS community.

Best of luck!

mfc2006

have a close friend with MS & he is doing great with his routine treatments. Best of luck to you!

LF55358

My Father and now my Wife was diagnosed just little more than a year ago. Coincidentally both my Wife and Father went blind and then their vision came back gradually within two months (this how they both found out) and they came back with perfect 20/20 vision afterwards. My wife gives herself injection (shots) 3 times a week and takes vitamin D. Like others have said rest when your body tells you. Exercise when you have energy and take it with good strides and laugh. Your're not alone and you will be just fine, there has been a lot of advances in the last 10-15 years since my dad had it, he wasn't' taking anything for his MS. So that should tell you something. Take care ask question, id be more than happy to answer them.

MayDay10

I know a number of people with it. Those who are relatively young and take control of their nutrition and follow their doctors orders and treatments... think positively seem to be ok. Or more than ok. Like healthier than most.

The older people i know... 55+ seem to have more difficulty, pain, disability, etc.

Just bide your time and medicalbreakthroughs are sure to come before long

deadendp

LVM,

I do have a friend with MS. She was diagnosed in her late 20's, having had symptoms for a few years. She was told that she either had a brain tumor, AIDS or MS. MS was the lesser of the three. Considering, she was beyond thrilled to be diagnosed with MS.

Now well into her 50's, she has experienced some physical changes. She is remitting-exacerbating and for a long time had managed her care with Betaseron. I'm not certain of the meds she is taking now, but she has rocked it out for 30 some odd years and has lived a great life. Is her life altered in ways that she hadn't expected? Sure. Has she had to accommodate for some changes? Sure. But, she lives a good life.

So many advancements have been made since she was diagnosed. While this is certainly a disease that has unfortunately not met up with a cure yet, there are a lot of opportunities for medical intervention that were not available even not so long ago.

Remember, we are here for you.

,
Amy

whispering hands

I used to work
For a lady in Joplin,Mo., that had Lupus, and MS, she worked circles around us all

ledvedderman

Well, here we are a couple of months later and I'm getting closer to some answers. I had an MRI of my spine last week and should hear from the neurologist either today or tomorrow. Symptoms have really been turned up to 11 the last couple of months. In the middle of February I had some sort of nerve thing in my back (worst pain of my life) that has given me numbness on my left side and a little on the right. That lead to physical therapy which I've been in now about a month. A couple of weeks ago my right knee started going out on me and then last week I fell for the first time. At therapy today, it was pointed out that the muscles on top and behind my knee aren't in sync and spasming...causing them to buckle. The therapist said it's likely a nerve issue with the signals getting delayed. To top it all off, I'm now walking with a cane for the time being. Sooooo...damnit.

mfc2006

ledvedderman said:

Well, here we are a couple of months later and I'm getting closer to some answers. I had an MRI of my spine last week and should hear from the neurologist either today or tomorrow. Symptoms have really been turned up to 11 the last couple of months. In the middle of May I had some sort of nerve thing in my back (worst pain of my life) that has given me numbness on my left side and a little on the right. That lead to physical therapy which I've been in now about a month. A couple of weeks ago my right knee started going out on me and then last week I fell for the first time. At therapy today, it was pointed out that the muscles on top and behind my knee aren't in sync and spasming...causing them to buckle. The therapist said it's likely a nerve issue with the signals getting delayed. To top it all off, I'm now walking with a cane for the time being. Sooooo...damnit.

sorry to hear that, man. Hopefully the PT will start to provide you some relief soon. Keep your head up.

hedonist

My good thoughts to you. If it helps to vent here as you're dealing with all of this, please have at it.

whispering hands

Praying for strength and perseverance in this LVM. We are all pulling for you!

ledvedderman

Thanks everyone. I don't feel the need to vent quite yet, but falling down and then seeing my legs spasm out of sync today were eye opening to that this just isn't in my head.

ledvedderman

Well, word came down yesterday that I do NOT have MS. So, that's the good news. There really is no answer for what it is exactly that's attacking my nervous system. Basically the signal from my brain to various parts of my body are getting delayed or lost along the way. My neurologist called me personally and said that science and medicine just isn't up to speed with something like inhave, so it's going to be a long road to recovery with a lot of trial and error excercises and medications.
I was talking to a friend last night and said how while getting a diagnosis of MS may have been worse, at least there's a plan of attack and treatment plan for MS. I think at this point I'd welcome that over a total crapshoot of what my diagnosis is now of no real certainty that these things will reverse. Being 34 and walking with a cane, stuttering, shaking, and not being able to write or process information well is beyond aggravating.

whispering hands

ledvedderman said:

Well, word came down yesterday that I do NOT have MS. So, that's the good news. There really is no answer for what it is exactly that's attacking my nervous system. Basically the signal from my brain to various parts of my body are getting delayed or lost along the way. My neurologist called me personally and said that science and medicine just isn't up to speed with something like inhave, so it's going to be a long road to recovery with a lot of trial and error excercises and medications.
I was talking to a friend last night and said how while getting a diagnosis of MS may have been worse, at least there's a plan of attack and treatment plan for MS. I think at this point I'd welcome that over a total crapshoot of what my diagnosis is now of no real certainty that these things will reverse. Being 34 and walking with a cane, stuttering, shaking, and not being able to write or process information well is beyond aggravating.

Big I can't even fathom this. I can't even truly empathize. But I can be here yo listen and encourage you. I am so sorry you are going through this.

jeffbr

Wow, that's both good and bad news, man. I'm really sorry to hear about the symptoms you've been experiencing recently. I kind of agree with your friend. At least with the MS diagnosis you had what you thought were some answers, and perhaps a path to dealing with it. But hopefully in the long run this will be better news, a proper diagnosis will be made, and a proper course of treatment can be prescribed to help you get past this. I wish you all the best. I'm sure you'll be subjected to more tests and trials, but hope that they lead to a really positive outcome. In the meantime, stay strong!

oftenreading

Oh my. You're left with a big bunch of unknowns and no clear treatment plan. I'm really sorry to hear it. I sure hope you have the resources around you to help you find a path to recovery.

ledvedderman

Well, it turns out I misunderstood the neurologist. MS is still very much on the table for me. I've been fighting with doctors to get some urgency into seeing a new neurologist, but that's not happening. I was all lined up to see an MS specialist, but since I was scheduled with another doctor in that practice, they wouldn't refer me to the other. I'm glad that my problems don't mean as much as a doctors feelings with losing a patient. Let's see, see the new guy in two weeks who specializes in MS in two weeks, or the doctor I saw years ago who will see me in three months. While we have been messing around with that, cold spots have started on one arm and on that hand. So, whatever this is, it's progressing. 
So who knows what's next. Here's the thing that is my biggest fear; my symptoms clearly point to something like MS, but I'm afraid of tests coming back fine while these symptoms continue to progress. I don't want to hear, "well, we don't know" again. I want some freaking medicine. I don't mind numbness, but I mind walking so slow, not having any control of my hands when writing, etc. I had a therapist say that the neurologist clearly doesn't see this as life and death and I'm grateful for that- but the quality of life is absolutely awful. 

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!