MS Need Support! Not getting it
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kimmbird
Posts: 55
Hi Group, this is really hard to post. For ten years I hv gotten more tired with ea passing year. 99% of the time I look and act normal, yet on the inside I am exhausted. Four years ago my metabolism stalled, so I started eating right and exercising. Exerting means crashing after I get home and re coop for four hours. This is not living and this is not normal. But I am a trooper and keep trooping on. Knowone understands how exhausted I am but I keep going.
I hv been tested for DM and thyroid so many times, I think my ins is going to put a stop to it. I hv done heart monitor, treadmill. Am such a good proactive patient, I got in shape, ate well so my doc said well you did it you are good. But they never listen when I say I hv 'spells'. For mths I will work out an hour four days a wk. then that one time, boom...and I can't function, can't get back to the gym. But som days I push and go and push through it and other, well not so good...
Anywho, I hv been following a nutrionist which has helped. Then I dropped her (sorry Adele, she's on MPF as well) and WW to take things in my own hands and tried Atkins kinda loosey goosey..great first week or two, no more cravings, losing wt, had more energy..and I thought I found the golden key...went back to my x classes. First one gd, next one, harder...the third one zapped any energy I had and I hvnt been back in six weeks. I still hvnt recovered...btw, I am back w my nutritionist, Adele.
Past 7 wks I hv been following 15-30 net carb per day, holding out for my body to switch to fat burning..ain't happening. This week I had a horrible 'spell' so bad that my family finally witness what I hv been say. My doc finally is ordering a MRI and I will see a neurologist...so I am not diagnosed w MS but going through the hoops at this point...
I need advice. Is there anything in the short post of my long time frustration that you may relate to. Have advice for me. Like I said I am proactive and losing wt isn't my primary concern. Right now, I want to feel better, I want to be able to ex. I want to understand what is happening to me...so frustrated...and if another dr says stress...I am not a stressed person, but they are makings me! Ugh!
Ps I will repost this in different focus for the most exposure...add me as a friend too would be marvelous!
I hv been tested for DM and thyroid so many times, I think my ins is going to put a stop to it. I hv done heart monitor, treadmill. Am such a good proactive patient, I got in shape, ate well so my doc said well you did it you are good. But they never listen when I say I hv 'spells'. For mths I will work out an hour four days a wk. then that one time, boom...and I can't function, can't get back to the gym. But som days I push and go and push through it and other, well not so good...
Anywho, I hv been following a nutrionist which has helped. Then I dropped her (sorry Adele, she's on MPF as well) and WW to take things in my own hands and tried Atkins kinda loosey goosey..great first week or two, no more cravings, losing wt, had more energy..and I thought I found the golden key...went back to my x classes. First one gd, next one, harder...the third one zapped any energy I had and I hvnt been back in six weeks. I still hvnt recovered...btw, I am back w my nutritionist, Adele.
Past 7 wks I hv been following 15-30 net carb per day, holding out for my body to switch to fat burning..ain't happening. This week I had a horrible 'spell' so bad that my family finally witness what I hv been say. My doc finally is ordering a MRI and I will see a neurologist...so I am not diagnosed w MS but going through the hoops at this point...
I need advice. Is there anything in the short post of my long time frustration that you may relate to. Have advice for me. Like I said I am proactive and losing wt isn't my primary concern. Right now, I want to feel better, I want to be able to ex. I want to understand what is happening to me...so frustrated...and if another dr says stress...I am not a stressed person, but they are makings me! Ugh!
Ps I will repost this in different focus for the most exposure...add me as a friend too would be marvelous!
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Replies
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I am sorry to hear that you are having a tough time. I was dx 10yrs ago. I hear that most people go through years of symptoms and frustrations and misdiagnoses, I was an exception. I woke up with no feeling on my left side from head to toe, they thought stroke at first but after a 2 day stay in hospital and countless tests they dx me with MS. It was total shock and denial it was so hard to deal with and no one understood. When I look back now after meeting other people with MS and going to support group for years I realize it might have been better than dealing with years of not knowing. I recovered from that 1st bout after several months rehab and have had several relapses over the years but for the most part I am pretty stable and no one would know I have MS unless I told them.
I totally understand about the exhaustion, but it only seems to bother me in extreme heat or if I am rundown in general. Being on meds over the years,listening to my body about when to rest, staying cool and watching my diet and exercising have helped tremendously. There are also meds for helping with the exhaustion, I have many friends who take them.Provigil is one.
The uncertainty of MS is what scares me the most, just wondering if or when another attack will hit me.
So you never mentioned if you take any MS meds, I know some docs will give them to patients with "possible" MS and some won't until an official dx is made. I recommend that if you get a dx and are not on meds, you get on them as soon as possible.
You can also try online support groups and contact the MS Society and MSAA for help. They have tons of educational material,support groups and programs that are free and helpful. Good luck with everything and I hope you can get some answers and some help.
Friend request sent
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Sorry to hear about your symptoms, which are vague sounding! MS, and things like lupus, Lyme disease, are all kind of vague and a lot of time they don't get diagnosed. I hope your doctor is checking you for all of those. Anyway, I went through some of what you're talking about, except that it was less than 10 years. I have lived my life tired, so I know exactly what you mean. And sometimes I am doing great working out for an hour or two at a time, then I'm exhausted.
That being said, I was glad to have a diagnosis, but honestly all it did was prompt me to be healthier. I think the lifestyle changes have been the best thing I've done for myself. Some things that have helped me have been the lifestyle changes like: eating much much cleaner, and losing weight, and exercise (which makes me tired in the short-term but more energetic in the longrun), have all been helpful. Also and I swear by this, try a teaspoon of cinnamon per day, can add it to oatmeal or something like that, but it can be great for inflammatory disease like MS. And Vitamin D3 (2000 units per day), which is also good for a lot of different illnesses. I buy Nature Made brand. And lots of naps. I try to get 8-9 hours of sleep per night, 9 is my magic number, but even sometimes that's not enough.
Anyway hope some of those tips help. Will add you on MFP with the warning that I'm not super active on here all the time. But I definitely am committed to sticking with it right now, since it's been so helpful for me for the past year. Hope you start feeling better!0 -
My advice is not to panic and just keep jumping through the medical hoops until you have some answers. Take good care of yourself. Rest when you need rest, keep an emphasis on overall health and find doctors that care enough to stick it out with you until you get some answers. There are some great medications for fatigue that really help, so just keep going and don't give up.0
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Not knowing is the worst part. I was diagnosed in March 2008 but now after seeing my neuro for 3 plus years it appears I've had MS since the 80's. It explains a lot of "weird" medical problems I had then. Too little, too late!
You do need to have a doctor that will listen to you and actually hear what you are saying. It may not be MS - as one of the others said there are other diseases out there that have similar symptoms. Having an MRI should help with a diagnosis but then again if you have no lesions on your head/neck MRI it doesn't mean there aren't some on you spine.
Do you have vision problems, dizzyness, vertigo, muscle spasms, speech difficulties, swallowing problems??? Fatigue is a big factor for most MS patients but it isn't usually what triggers a diagnosis. You should probably do some reading on the MS Society site just to learn a bit more about possible symptoms and how they can or cannot be treated. There are different types of MS and each one has its own treatments. I have found that if I go into the doc with at least some idea about what my symptom could mean then it is easier to get them to listen to me.
I'm not sure if I'm going to be much help to you - but I'll send a friend request. I am having some cognitive problems and am feeling pretty down right now - but it usually doesn't last too long. I'll be back to my cheerful self in a while. :ohwell:0 -
I am sorry to hear that you are having a tough time. I was dx 10yrs ago. I hear that most people go through years of symptoms and frustrations and misdiagnoses, I was an exception. I woke up with no feeling on my left side from head to toe, they thought stroke at first but after a 2 day stay in hospital and countless tests they dx me with MS. It was total shock and denial it was so hard to deal with and no one understood. When I look back now after meeting other people with MS and going to support group for years I realize it might have been better than dealing with years of not knowing. I recovered from that 1st bout after several months rehab and have had several relapses over the years but for the most part I am pretty stable and no one would know I have MS unless I told them.
I totally understand about the exhaustion, but it only seems to bother me in extreme heat or if I am rundown in general. Being on meds over the years,listening to my body about when to rest, staying cool and watching my diet and exercising have helped tremendously. There are also meds for helping with the exhaustion, I have many friends who take them.Provigil is one.
The uncertainty of MS is what scares me the most, just wondering if or when another attack will hit me.
So you never mentioned if you take any MS meds, I know some docs will give them to patients with "possible" MS and some won't until an official dx is made. I recommend that if you get a dx and are not on meds, you get on them as soon as possible.
You can also try online support groups and contact the MS Society and MSAA for help. They have tons of educational material,support groups and programs that are free and helpful. Good luck with everything and I hope you can get some answers and some help.
Friend request sent
I couldn't have said it better myself. Your story is just like mine. I was dx almost 6 yrs ago.0 -
I am 2 years old in MS, and for the past year I have been gluten free, chemical free, and trying to eat clean all the way. Going gluten free reduced my inflamation incredibly! For me the first year was when I had to deal with the fatigue, but now with exercise and diet, I only lay down for a few minutes here and there, and the heat is what I have to watch, so I have a neck cooling cloth, and in between yoga and water aerobics, I keep pretty cool. I hope that you find what is right for you and your MS...I think where we have our lesions makes us all a little different. I take my injectible every other day, and a muscle relaxer and the generic nuerontin?, whatever it is, it all keeps me moving. We have MS support groups here, and that connection is great, we all know eachother and talk about everything. Good luck to you in this tough time, I hope it gets lots better!0
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Thank you all sooooo much ((((hug)))) I needed all your words of support and understanding my frustrations. My doc said she can't help and isn't giving up and believes me, yeah, I feel so validated. I hv an appt fri w the neurologist. I feel emo just thinking about it..is she going to be supportive, proactive or make me wait and wait, ugh
I am doing so much reading that it at times I am over whelmed...now I am going to focus on what kind of diet helps. Maybe find a support group that accepts those of us who are confused and wo diagnosis
Again thanks sooooo much!0 -
Thank you all sooooo much ((((hug)))) I needed all your words of support and understanding my frustrations. My doc said she can't help and isn't giving up and believes me, yeah, I feel so validated. I hv an appt fri w the neurologist. I feel emo just thinking about it..is she going to be supportive, proactive or make me wait and wait, ugh
I am doing so much reading that it at times I am over whelmed...now I am going to focus on what kind of diet helps. Maybe find a support group that accepts those of us who are confused and wo diagnosis
Again thanks sooooo much!
It's important that the neuro be supportive and proactive, so if your not happy or comfortable with that one, find another!
My first neuro was so cold and unfeeling of what I needed when newly diagnosed that she was more of a problem than a solution. Found a new one and he was wonderful!0 -
Can u clarify, do you know you have MS or do you have all these symptoms that don't have an explanation that is getting evaluated for MS? I thought the whole time I read that you already know you have it, but a statement at the end said something about getting evaluated for it.0
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Hi
Sorry to hear about your fatigue. Personally I'd stay clear of Atkins like the plague and research into the role of saturated fats, good fats and dairy in ms. Here is my bible http://www.overcomingmultiplesclerosis.org/
Hope you see an improvement.0
