[ARCHIVED THREAD] - Multiple Sclerosis (Page 1 of 3)
Posted: 12/10/2014 11:06:48 AM EDT
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My GP says I have it.
He wouldn't be so bold if he wasn't positive. That MRI I had a week or two back was not as encouraging as I thought it was. He wants a list of Neurologists that are in my insurance network so he can get me in to see one. It explains the last year or two of crap I've been dealing with. my wife and I went home and spent the afternoon reading and the evening talking. Trying to find a doctor that looks competent. Talking about how it isn't any different than my health was last week, and that it was actually a relief to have a name to put to the adversary. We went to bed early and made love. Sweet, comforting love that turned into me riding her hands free like Leonardo Dicaprio leaning over the front rail of the Titanic with his arms in the air. LOL! That was liberating! 
Then I laid awake half the night. I know people go through much worse. Last night I prayed for a guy who's wife is dying of cancer. I can think of several members here that are fighting cancer. I'm just frustrated. I'm pissed. I'm afraid. I'm tired. |
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Sorry to hear this op. What were your symptoms of you don't mind saying? A long laundry list. All the stuff you would expect if you were 70. Muscle pain...everywhere, for no reason. Muscle cramping. Headaches diahrea constipation speach problems problems with mental function depression uncontrolled laughing or crying fatigue balance problems no stamina physical exertion leads to any or all of the above symptoms. Short term memory loss long term memory loss vision changes and blurry/double vision Black rifle disease I may have forgot a few. You know, I could stay this way for a long time and live with it. But there's no rules that I can read about. It will do what it wants, and I can do whatever I want, including making myself sick by overdoing. From what I understand, it's just going to do what it wants and when symptoms get worse they start prescribing drugs to aleviate the symptoms. Maybe I'm wrong. Things are still sinking in or sliding off. |
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It effects everyone differently, get with a good neurologist and get on a drug. Some symptoms can improve with time depending on what type of MS you have. Did the Dr say how many lesions you have, are they just on your brain or spinal cord too? this, pretty much every MS patient is totally unique. Have a friend who was doing great, for 20+ years with MS, did virtually everything she wanted. She would have pains, and be tired but she kept going Then one day crashed her motorcycle and was partially paralyzed. A double whammy. 
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Quoted: A long laundry list. All the stuff you would expect if you were 70. Muscle pain...everywhere, for no reason. Muscle cramping. Headaches diahrea constipation speach problems problems with mental function depression uncontrolled laughing or crying fatigue balance problems no stamina physical exertion leads to any or all of the above symptoms. Short term memory loss long term memory loss vision changes and blurry/double vision Black rifle disease I may have forgot a few. You know, I could stay this way for a long time and live with it. But there's no rules that I can read about. It will do what it wants, and I can do whatever I want, including making myself sick by overdoing. From what I understand, it's just going to do what it wants and when symptoms get worse they start prescribing drugs to aleviate the symptoms. Maybe I'm wrong. Things are still sinking in or sliding off. Quoted: Quoted: Sorry to hear this op. What were your symptoms of you don't mind saying? A long laundry list. All the stuff you would expect if you were 70. Muscle pain...everywhere, for no reason. Muscle cramping. Headaches diahrea constipation speach problems problems with mental function depression uncontrolled laughing or crying fatigue balance problems no stamina physical exertion leads to any or all of the above symptoms. Short term memory loss long term memory loss vision changes and blurry/double vision Black rifle disease I may have forgot a few. You know, I could stay this way for a long time and live with it. But there's no rules that I can read about. It will do what it wants, and I can do whatever I want, including making myself sick by overdoing. From what I understand, it's just going to do what it wants and when symptoms get worse they start prescribing drugs to aleviate the symptoms. Maybe I'm wrong. Things are still sinking in or sliding off. How you get the treatment you need and live the rest of your life as symptom free as possible. |
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It effects everyone differently, get with a good neurologist and get on a drug. Some symptoms can improve with time depending on what type of MS you have. Did the Dr say how many lesions you have, are they just on your brain or spinal cord too? MRI didn't go down far enough to image the spinal chord. GP said the report mentioned lesions in the white matter of my brain consistant with demyelinating (the sheath covering nerve structure disintigrates). See? I knew if I started a thread whining about it, people would chime in and offer personal or second hand observations that would lift my spirit. That's what I wanted. Thanks. |
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The guy sitting behind me at work has MS. Going on 11 years now. Other than a slight tremor, you would never know he had anything wrong with him.
Get a second opinion while you are at it. A GP is not someone you should accept a complicated diagnosis like MS from. Go see a Neurologist, specifically a Movement Disorder Specialist. I was misdiagnosed with MS in 2010 by a GP. Similar symptoms to what you are describing. Turned out to be something worse. A Neurologist finally got it right. |
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Hold off on knowing for sure you have MS, there are many other diseases or ailments that are similar. The neurologist will test for several things before diagnosis.
There are new oral meds that hold it at bay vs shots that were prevalent just a couple years ago. My wife has had it for years and is doing well overall. All the meds have some side effects. You'll have to find the one that works for you. Make sure and look into copay assistance programs for the meds to help on costs. My wife was on rebif for a few years, side effects were bad not to mention the shots. Now she is on tecfidera and it's much better for her, and it's a pill. Main thing is avoid stress, stay out of the heat, eat right, stay fit. Pm me if you ever need to talk. |
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I know a lady that has had it for years.
She runs marathons and shit. We went to a fundraiser once that she and her husband were doing and she'd just run one. For some reason it had made the MS flare up and made her one arm not work for a little while. So she just held her drink with the other hand and talked about it like it wasn't a big deal. I guess if you view it like a death sentence it'll end up being one. But that can be said of life itself. |
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My wife got diagnosed with it in 2007... for several months in the beginning she looked like she had cerebral palsy or something, she could barely walk and her whole left side was somewhat paralized... she had trouble doing everything... I had to do everything for her except wipe her butt and feed her. Today she is on a drug called Tysabri. Her quality of life is as close to normal as it can be, but she will never be able to hold down a job full time again. She gets worn out very easily, and she's only 37....
- Clint |
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My ex-FIL has had MS for decades and has been doing pretty well the last I heard.
For the balance and stamina issues, you may want to look into some tai chi. I've personally seen tai chi make a significant difference for several people with MS. There's also been some promising research showing that it can help with the stress, mental well being, and balance. http://www.nationalmssociety.org/Living-Well-With-MS/Health-Wellness/Exercise/Adaptive-Tai-Chi http://www.mstrust.org.uk/research/updates/articles/update140826.jsp Is Tai Chi beneficial for people with MS?
Summary Tai Chi is a Chinese martial art that incorporates gentle physical exercise with mindfulness training. This study aimed to investigate the effect of a six month long programme of Tai Chi on people with MS. 32 people with MS in Germany took part in the study. 15 participants took part in a six month Tai Chi programme where they took part in a 90 minute class every week and 17 were the control group and did no Tai Chi. The study found that the participants who had taken part in the Tai Chi programme had significant improvements in their balance, coordination and depression. Participants in this group were also more satisfied with life after the programme. Levels of fatigue remained relatively stable in the Tai Chi group, but increased in the control group. The study results indicate that Tai Chi could be useful for people with MS. It appeared to have a beneficial effect on balance and coordination as well as psychological wellbeing. The authors conclude that further larger studies are needed to confirm their results as they only looked at a small group to test the programme they had designed. http://www.ncbi.nlm.nih.gov/pubmed/25145392 (medical journal article on the above study) RESULTS:
Following the intervention, the Tai Chi group showed significant, consistent improvements in balance, coordination, and depression, relative to the [control]group (range of effect-sizes: partial ?2?=?0.16 - 0.20). Additionally, life satisfaction improved (partial ?2?=?0.31). Fatigue deteriorated in the comparison group, whereas it remained relatively stable in the Tai Chi group (partial ?2?=?0.24). |
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I have been dealing with this for over 3 years, the first symptom was Optic Neuritis,and I just had a flare up this past week and went to see the eye doc yesterday. Originally when it first happened I went for an MRI and had no brain lesions but haven't been back for another MRI. I saw two neurologist, and both told me MS but made no plan of action until, if ever I get worse symptoms. Tired all the time ,numbness in my feet and hands and PAIN and sometimes confusion and trouble remembering things. The things I have trouble remembering are stupid little things like years of cars that I bought and such. Good luck to you OP my problems have been minimal so far and I hope it stays that way but I figure with my luck when I retire is when it will hit me hard. Just for your info I was 48 when I first got the O.N. and I will be 52 next week.
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My mother was diagnosed in her 20s, she's in her mid 60s now, and while she has symptoms, she is still active and lives a very good life. The disease is incredibly frustrating as there isn't a ton of great research and there isn't a sure fire cure, but I can tell you that diet and exercise is incredibly important.
Fight it. |
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Look into Gilenya and Gabapentin. Those are the big MS drugs that someone near and dear to my heart has to take all the time to control her symptoms. She's 41 and functions normally, but definitely experiences the fatigue and memory loss, numbness in certain areas etc. Also find out if you have relapsing MS. That's what she has where she'll be fine most of the time but when a relapse hits her (usually in summer) she's down in bed for the duration almost. |
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Tecfidera (aka BG-12/ Dimetyl Fumarate) is more a pretty safe oral drug that does better than the injectable (Interferon and Copaxone (glatiramer acetate) ones in terms of EDSS scores, relapse rate, etc. It was used for ~20 years in Psoriasis first, so it has a pretty decent track record. It definitely has a better side effect profile than the other oral drugs.
The only bullshit part of Tecfidera is that the active ingredient costs about $100 to buy a years supply from Sigma-Aldrich, and has been off patent (as a chemical) for 100 years. You're insurance will wind up paying $40-$50,000 a year for it since there is a patent on its use in MS treatment. On the upside, you probably won't even have a copay. (As one would suspect with that sort of wild profit margin, the invisible hand of the free market is prompting some people to simply buy the active ingredient and filling their own http://www.dmfms.de/dmf_e.htm.) Something to look into is the newly improved Lemtrada infusion (repurposed cancer drug Campath). You take a 5 day course of infusions, followed by another 3 days a year later, and monthly bloodwork to followup. It essentially resets the immune system, and gives some really good long term results, though 33% of people have thyroid autoimmunity issues after Lemtrada, and maybe half of those (~10%) wind up on thyroid hormone for the rest of their lives. Right now, it may be somewhat difficult to get Lemtrada without demonstrating that lesser drugs didn't work, though in most other countries it can be used first line (and seems most effective when taken early). Given the risks, involved, now that Lemtrada is approved, I don't see much point in Tysabri, it was a monthly infusion that was more effective than the injectable drugs, but it carried the risk of fatal brain disease, and didn't really alter the long term prognoses the way Lemtrada does. Having said all of that, I would highly recommend Tecfidera or Lemtrada, and soon, as the sooner you start treating with an effective drug, the better the long term results seem to be. ETA: the best source for technical information on research is here: http://multiple-sclerosis-research.blogspot.com/ |
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Prayers sent OP.
I know a couple people who have MS and it effects them very differently. IIRC there are a fair number of newer, efficacious treatment options that weren't around a decade ago. (I think they may actually exacerbate black rifle disease though!) While it's easier said than done, stay positive. Your mental state and outlook have a far greater impact on outcomes than most realize. |
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Before you get an official diagnosis got get disability insurance!
Get your own short-term and long-term, something you buy and not through your employer. Once you have the diagnosis you will be uninsurable so make sure its your own policy that goes with you from job to job. You will thank me later. |
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I am friends with a girl who was diagnosed with MS right after high school. That was 25 years ago. I still can't tell she has it today. She has good days and some bad but with diet control and on her medication, she has very few bad days.
I'm praying for you. You will win over this thing man. I empathize with you a little, 8years ago I had some issues and had an MRI. My doctor told me i had MS, but he wasn't 100 percent sure and wanted me to see a radiologist. when could i see that guy? in TWO WEEKS. For two weeks I thought I had ms. later we found out I had something else, but it was a long two weeks. keep it together, do the research, find a good doc, work the problem, and move forward in life. You got this this man. |
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Before you get an official diagnosis got get disability insurance! Get your own short-term and long-term, something you buy and not through your employer. Once you have the diagnosis you will be uninsurable so make sure its your own policy that goes with you from job to job. You will thank me later. Disability insurance is worded so that any Dr. visits or tests leading to a MS diagnosis would exclude you from a policy. |
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Sis has it.
She is world class in her profession, traveling to all sorts of places, giving lectures, being hyper-active in the community. Hasn't slowed her down one bit and she refuses to let it. It really isn't discussed anymore. Not because it is the white elephant in the room but because nobody ever thinks of it and she doesn't broadcast. Think it has been 10 years on. So it has a lot to do with what you make of it. Do you know what type/level/stage/whatever you have (mild to severe)? I can say it can do some weird stuff to your body. Sis found out when she woke up one morning blind in one eye. Vision popped back a few days later but then the side of her body 'went to sleep'. That came back to. Interestingly........she was born at a USMC base that has had questions raised over its water supply, contamination, and strange neurological illnesses. She was there growing up right smack in the middle of it and we have zero history in our family. |
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I go see a Neurologist Feb. 5th to start the evaluation process.
From what I have read, I probably have the type that symptoms never go into remission. It's just a guess, because I have another auto-immune illness that has me disabled, and most of the symptoms are shared. So it's hard to say which disease is causing which symptoms. The symptoms I have been living with the last few years ebb and flow, determined partly by my activity level, but they never go away completely or go into remission. There are a couple of new symptoms that I think are being caused by the MS. The only mobility/motion/motor problems I have are a slight difficulty with speech and my hands have a tremor when I am ill. I haven't had migraines, or sudden blindness in one eye, or numbness that causes a limb to not function, or other sudden onset, severe symptoms that are treated with steroids or just go away (into remission). There have been times I was using a wheelchair in large hospitals, because I was too weak to walk long distances, but that was many years ago and I was experiencing muscle wasting and other problems from my metabolism being so high. Last night we made love again and then I only got about three hours of sleep. My muscles were hurting again. Today I will be a little sick. If I don't get a good night's sleep tonight, I will be sick big time over the weekend. My digestion stopped a few days ago. I'm constipated, but when things start moving I will eliminate a bunch of half digested food all at once. Maybe that's too much info, but it's an example of things that happen when I do not get eight hours of sleep plus a nap every day and exert myself too much. What bothers me the most is the fact that I only have half the stamina that I did a year ago. That's not good at all, because my tolerance for physical activity IS my disability, when you boil everything down. Going over the physical activity threshold is what brings on the various symptoms. I've been ill constantly since the 4th of July, when we started making love several times a week. We hadn't made love in years. Suddenly I became hypersexualized. Yesterday I found out that there is a tiny chance that a lesion formed on my spinal chord in just the right place to make a person horny all of the time. I was told to enjoy it while it lasts, because it probably won't last forever. Whatever. It's not anywhere near as much fun as it sounds to walk around horny all of the time and do things until body parts need to heal for several days. On one hand, my wife is all smiles and I feel like Superman. On the other hand It's bad for my health, and she feels like she's encouraging me. The part that really sucks is that no matter how long we stretch out the foreplay, she can only last about a half hour and it takes me at least an hour to get off. My orgasms occur after she is asleep. It's so frustrating I'd stop if I could. Thus ends our whiney too much information update. |
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Good luck man. I just got my official diagnosis Thursday. FML. Thinking back, I had my first likely symptom a couple of years ago. I have a somewhat lazy eye, and it can wander off when I'm relaxed or tired. But I can always blink and snap them back in line. Suddenly, I couldn't do it anymore. Stuck with double vision. It went away by itself in a couple of days, before my scheduled eye doc appt. I went in anyway, and he didn't see anything wrong. He said it was probably fatigue. But I hadn't been particularly tired. A couple of months ago, I had pain in my left eye when I looked up or left. A couple of days later, my vision in that eye started getting blurry at all distances. Went to an optometrist. He saw it was irritated but saw no sign of infection. Told me to put warm compresses on it and use eye drops. Two days later, my vision had declined ot the point that I could see only vague shapes, light, and motion. Went in to an ophthalmologist, and he saw that my optic nerve was inflamed -- optic neuritis. He said that was a common symptom of MS, and he wanted me to get an MRI just in case. Results came back, and he sent me to a neurologist. A couple of days before the neurologist appt, I started feeling shoulder and neck pain, tingling on the back of my head, and in my hands and feet. Neurologist looked everything over, and said I have MS. Seven lesions in my brain. One medium, three small, and three tiny. Going to have another MRI to look at my spine next month. Then we'll get a course of treatment going. I'm already reading up on the different drugs available. At this point, my left eye is almost back to normal, but not 100%. Maybe 90-95%. My neck isn't hurting anymore, but it's still tingling a bit on and off, I have some light numbness in my right upper back and back of my right arm, and sometimes my right arm and hand hurt. No loss of strength, but it feels like it's getting pins and needles and waking back up. I have also started having momentary pain in my legs when first standing, but that may be because I need to lose weight. Not sure. I've always been overweight, but I'm starting a diet right after Christmas. I figure if I'm going to have the possibility of mobility issues in the future, I don't want to compound them by being really heavy. |
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I have two friends in their early 40s diagnosed last year.
Both are healthy people. One swims, the other is a cyclist. Exercise does help they say. My buddy started doing yoga and is pretty serious about it. He said teh mental aspect has helped him with depression. The cyclist is a gal and she says she is doing OK but when she has an episode the damage is permanent. She is on very expensive meds that her insurance covers. They are both generally OK and coping. Taking care of themselves seems to be the best medicine. Get your self as heathy as you can |
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Good luck man. I just got my official diagnosis Thursday. FML.
Thinking back, I had my first likely symptom a couple of years ago. I have a somewhat lazy eye, and it can wander off when I'm relaxed or tired. But I can always blink and snap them back in line. Suddenly, I couldn't do it anymore. Stuck with double vision. It went away by itself in a couple of days, before my scheduled eye doc appt. I went in anyway, and he didn't see anything wrong. He said it was probably fatigue. But I hadn't been particularly tired. A couple of months ago, I had pain in my left eye when I looked up or left. A couple of days later, my vision in that eye started getting blurry at all distances. Went to an optometrist. He saw it was irritated but saw no sign of infection. Told me to put warm compresses on it and use eye drops. Two days later, my vision had declined ot the point that I could see only vague shapes, light, and motion. Went in to an ophthalmologist, and he saw that my optic nerve was inflamed -- optic neuritis. He said that was a common symptom of MS, and he wanted me to get an MRI just in case. Results came back, and he sent me to a neurologist. A couple of days before the neurologist appt, I started feeling shoulder and neck pain, tingling on the back of my head, and in my hands and feet. Neurologist looked everything over, and said I have MS. Seven lesions in my brain. One medium, three small, and three tiny. Going to have another MRI to look at my spine next month. Then we'll get a course of treatment going. I'm already reading up on the different drugs available. At this point, my left eye is almost back to normal, but not 100%. Maybe 90-95%. My neck isn't hurting anymore, but it's still tingling a bit on and off, I have some light numbness in my left upper back and back of my right arm, and sometimes my right arm and hand hurt. No loss of strength, but it feels like it's getting pins and needles and waking back up. I have also started having momentary pain in my legs when first standing, but that may be because I need to lose weight. Not sure. I've always been overweight, but I'm starting a diet right after Christmas. I figure if I'm going to have the possibility of mobility issues in the future, I don't want to compound them by being really heavy. Good luck man. I hope your bad days are good and your good days are great |
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I hope your symptoms resolve themselves soon.
I've been reading up on the drugs too. I'm not sure they will do me any good but I'm trying to get educated. One of the things I've learned is I need to quit taking long hot showers. I knew that Summer heat was bad and getting overheated makes me sick, but I didn't realize how weak I've been getting from just taking a long hot soaking shower to ease the muscle pain. Instead of relaxing me it makes me ill before I finish showering. I'm expecting to have another MRI after I meet with the Neurologist. At least one of the spine. She may want to do the head again. All of these tests are going to bury us financially. *sigh* It is what it is. If that's what I've got and medication will make a big difference, then I want to know. Good luck with the diet and the spinal MRI. |
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Christmas was craptastic. By far the worst flare-up I've ever had. Probably brought on by the stress of the diagnosis. Serious fatigue. Played a board game and had to lie down afterward. Pain, tingling, and numbness alternating in all four limbs, my back, and parts of my head. Had one brief episode of mental confusion and lightheadedness. Realized I'd had the exact same feeling along with repeated bouts of arm pain in 2007. Doc at the time had me do physical therapy, and it went away. I guess I've had this since at least then. Felt much better yesterday. The fatigue and pain are gone, but I am getting occasional tingling in places I had it during the flare-up, and my hands feel a little funky. I'm getting more typos than usual when I type. I hope I'm still recovering, and this isn't the new "normal." My plan is to stretch every day, exercise every other day (once I'm sure the flare-up is done), and have some quiet relaxation/meditation time every evening. I wish my next neuro appt was sooner. |
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Quoted: I hope your symptoms resolve themselves soon. I've been reading up on the drugs too. I'm not sure they will do me any good but I'm trying to get educated. One of the things I've learned is I need to quit taking long hot showers. I knew that Summer heat was bad and getting overheated makes me sick, but I didn't realize how weak I've been getting from just taking a long hot soaking shower to ease the muscle pain. Instead of relaxing me it makes me ill before I finish showering. I'm expecting to have another MRI after I meet with the Neurologist. At least one of the spine. She may want to do the head again. All of these tests are going to bury us financially. *sigh* It is what it is. If that's what I've got and medication will make a big difference, then I want to know. Good luck with the diet and the spinal MRI. How much are you paying for MRIs? My wife's old insurance plan was (what we paid) $400 for each MRI. Her current insurance is $60 for each MRI. Of course the radiology bills add up. Negotiate with whomever to see if they can get you a payment plan. It seems as if medical billing is sending bills off to collections before anyone has a chance to pay them, large or small. I recently paid off a radiology bill, only to have them send it off to collections after it was paid, and I had to fight collections... I know an older lady to was diagnosed with MS some 20 years ago or so. She's been on some sort of medication and hasn't had any MS problems within those 20 years, so she says. |
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I'm 55 and was diagnosed with MS in 2011. Long story, but it progressed to the point I was unable to use my right arm. I left the hospital with a walker. A year of Tysabri and physical therapy got me back to functioning semi-normally.
Now on Gilenya. I still limp and have to speak slowly. Arm is about 90% back to normal. I work in a office, so no real problems there. I still do my lawn work, garden, shoot and hunt. Took a doe last week. I can't do some things like before. But I'm like one of those toy cars that bumps into a wall, backs up and goes in another direction. The worst part was (and is) uncertainty. But trust in God, watch for symptoms and find good doctor. Good luck. |
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Quoted: I'm 55 and was diagnosed with MS in 2011. Long story, but it progressed to the point I was unable to use my right arm. I left the hospital with a walker. A year of Tysabri and physical therapy got me back to functioning semi-normally. Now on Gilenya. I still limp and have to speak slowly. Arm is about 90% back to normal. I work in a office, so no real problems there. I still do my lawn work, garden, shoot and hunt. Took a doe last week. I can't do some things like before. But I'm like one of those toy cars that bumps into a wall, backs up and goes in another direction. The worst part was (and is) uncertainty. But trust in God, watch for symptoms and find good doctor. Good luck. Are you saying it had progressed to the point you couldn't use your arm before you got your diagnosis? Tysabri caught my eye when I was reading up on treatment drugs, because it has a very high effect on slowing progression. But it seems like they're using it mainly as a short-term treatment, not long-term, since longer use seems to increase risk of a very nasty brain infection. Anyone use Tecfidera? |
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Anyone use Tecfidera? Yes that is what I take. I was diagnosed with MS 6-7 years ago and was originally prescribed Copaxone (a daily injection). Seemed to work ok, but quite often gave me pretty severe nausea. About 8 months ago I began seeing a different neurologist who switched me over to Tecfidera hoping it might improve my walking (which is very bad). Haven't really noticed much improvement, but nothing has become any worse either, so I'll take that. The first 2-4 weeks of starting Tecfidera were very rough for me (which is pretty common) - lots of unpleasant side effects. But after that I seemed to really level out and it has been pretty pleasant since then with no severe side effects. My MS is pretty severe, it is almost completely in my spine (rather than brain) and, according to all the neurologists I have spoken with, makes it much more difficult to treat. My sense of balance is pretty well gone and I have very limited use of my legs. My arms were equally bad initially but that has pretty well gone away over the years and I have full use of them again. My walking however is terrible. I have to use a cane (or two) to move anywhere and even then I am pretty wonky. The doctors I have seen over the years were amazed that I can even walk at all given the MRIs of my spine are so bad. I know I will eventually end up in a wheelchair, and I am ok with that, but am happy I can move under my own power still. For that I feel blessed. Only bench shooting for me though 
The best advice I can give anyone is to stay positive about the whole thing. Sometimes we are dealt a really shitty hand, but what you take away from it is what will help or hurt you. Attitude is key. Some things in your life are going to change - there is nothing you can do about that. Self pity and depression will only make matters worse. So many trivial things in life that used to seem so important to me now seem so inconsequential. My mindset has become so positive compared to the person I was prior to all of this. Often my employees will come to me with a very minor issue which they are very upset about, I politely explain to them that if that is the worst thing that happens to them in a day they are doing pretty good. I try to live by that motto. Perhaps I am just really stubborn, who knows. To AR-10 and Admiral_Crunch, feel free to IM me anytime and I will give any advice I can. I am by no means an expert on MS, but have been living with it for quite some time and am happy to provide advice from my experience (however humble it may be). Good luck to the both of you, some things will be very different for you from here forward but what you make of them and overcome will be the deciding factor in how much this wears on you. |
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PM me and I'll get back to you when I am off leave and in front of a computer (I hate typng a lot on the phone). I have watched my dad live with MS for the past 25 years... He was 32 when diagnosed and is now 57.... I promise to get back to you just give me a couple days.
I'll pray for you and your family and tell you to never stop fighting and never give up. |
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A long laundry list. All the stuff you would expect if you were 70. Muscle pain...everywhere, for no reason. Muscle cramping. Headaches diahrea constipation speach problems problems with mental function depression uncontrolled laughing or crying fatigue balance problems no stamina physical exertion leads to any or all of the above symptoms. Short term memory loss long term memory loss vision changes and blurry/double vision Black rifle disease I may have forgot a few. You know, I could stay this way for a long time and live with it. But there's no rules that I can read about. It will do what it wants, and I can do whatever I want, including making myself sick by overdoing. From what I understand, it's just going to do what it wants and when symptoms get worse they start prescribing drugs to aleviate the symptoms. Maybe I'm wrong. Things are still sinking in or sliding off. Quoted:
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Sorry to hear this op. What were your symptoms of you don't mind saying? A long laundry list. All the stuff you would expect if you were 70. Muscle pain...everywhere, for no reason. Muscle cramping. Headaches diahrea constipation speach problems problems with mental function depression uncontrolled laughing or crying fatigue balance problems no stamina physical exertion leads to any or all of the above symptoms. Short term memory loss long term memory loss vision changes and blurry/double vision Black rifle disease I may have forgot a few. You know, I could stay this way for a long time and live with it. But there's no rules that I can read about. It will do what it wants, and I can do whatever I want, including making myself sick by overdoing. From what I understand, it's just going to do what it wants and when symptoms get worse they start prescribing drugs to aleviate the symptoms. Maybe I'm wrong. Things are still sinking in or sliding off. Your symptoms are what we call "non specific." Of course, MS is the king of non-specific symptoms. I would never diagnose on MRI alone, and your doc is right to refer you. Get a spinal tap and a MRI of the C spine. I get referrals every week of "suspected MS" that turn out to be negative. Don't start writing your will yet. (dibs on guns though) |
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Quoted: My GP says I have it. He wouldn't be so bold if he wasn't positive. That MRI I had a week or two back was not as encouraging as I thought it was. He wants a list of Neurologists that are in my insurance network so he can get me in to see one. It explains the last year or two of crap I've been dealing with. my wife and I went home and spent the afternoon reading and the evening talking. Trying to find a doctor that looks competent. Talking about how it isn't any different than my health was last week, and that it was actually a relief to have a name to put to the adversary. We went to bed early and made love. Sweet, comforting love that turned into me riding her hands free like Leonardo Dicaprio leaning over the front rail of the Titanic with his arms in the air. LOL! That was liberating! Then I laid awake half the night. I know people go through much worse. Last night I prayed for a guy who's wife is dying of cancer. I can think of several members here that are fighting cancer. I'm just frustrated. I'm pissed. I'm afraid. I'm tired. Prayers sent. Do EVERYTHING your doc tells you to
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| Crap that is a lot of folks effected by MS on this forum. I don't have a lot of experience with MS other than transporting patients with it, but I will say that a lot of strides have been made in the last decade in research on it. I don't envy your position OP, but stay positive. I am unsure of whether you believe in God or not, but I really believe he only throws at us what we can handle. So keep your chin up, keep moving forward, and keep living life. Don't let MS define who you are. I'll be sending prayers for you. |