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Living scared with 'possible MS' diagnosis
Three years ago my head started to shake side to side, occasional at first, then constant. Prior to that, I had a couple seizures. Multiple tests and appointments later, MS became the preliminary diagnosis (not enough for definative). There is one lesion on MRI with inflammation that they think is causing the trouble. I go to Brigham and Woman's MS clinic in Boston twice a year, with a "wait and see" approach. Since this started, I've been anxious, depressed at times, and thinking more about endings instead of beginnings. Although I've made some positive changes in my life, I also find myself feeling terribly worried a lot of the time. I seem to be waiting for the ax to fall. Anyone else in this situation who has found a good way to deal with it emotionally? Any help appreciated.
I have not yet seen a neurologist or had an mri, but i'm on the waiting list to see one due to the burning sensations and pins and needles i've had moving around my body for weeks now. I've also had pain behind my eyes, normally just on the left but sometimes both, and aches and pains all the time in my limbs and joints. I'm always tired, but I don't know if I'd class it as fatigue as such, probably more to do with the fact I'm not sleeping well due to the worry. I'm a 21 year old student and I'm really very scared. I'm not sure how to stop worrying about it while I have to wait to see someone. Anyone got any ideas on how to take your mind of it whilst waiting? Thanks.
Dear Headshaker,
I have been experiencing MS/Lyme like symptoms too... just started 4 months ago... been through neuro exam with GP (passed) ... then I went to neurologist and passed the neuro and MRI and still continue to have mysterious stuff going on...
I feel for you and the rest of us who to continue to carry on without a dx... if it helps any, check out www.erasems.org.. Nancy Davis, who has MS, heads up this org, is doing a lot of great things including seminars (open to the public) across the country with leading neurologist... could be a good place to start...
Take care, hope u feel better.
I have been experiencing MS/Lyme like symptoms too... just started 4 months ago... been through neuro exam with GP (passed) ... then I went to neurologist and passed the neuro and MRI and still continue to have mysterious stuff going on...
I feel for you and the rest of us who to continue to carry on without a dx... if it helps any, check out www.erasems.org.. Nancy Davis, who has MS, heads up this org, is doing a lot of great things including seminars (open to the public) across the country with leading neurologist... could be a good place to start...
Take care, hope u feel better.
head shaker,
Although I hope you don't have MS and never get another lesion on MRI, if you do have it it's better to know sooner than later in my opinion, so it's good that you are going for regular check-ups. That way you can treat it early-if you choose to do so-with disease-modifying drugs that hopefully will lead to fewer relapses in the future. At least you are being followed every six months to see if there are any changes/new lesions on MRI and hopefully the time spent before you get a definitive diagnosis will help you to come to terms/acceptance with the possibility that you might have MS if that is what the doctors are thinking. It is also nice to have a diagnosis, whatever it is, just for the simple fact that there isconsideration and acknowledgement from others that you are indeed sick. When you aren't given a diagnosis go go along with your symptoms you feel as though others don't believe your symptoms are real, that you couldn't possibly feel as sick/distressed as you do.
I know the wait to see what is going to show up is hard, but there are actually people who have symptoms consistent with MS who have been trying to get a diagnosis for 10+ years (I am one of them and SultrySkies is too) but haven't been able to either due to lack of money/health insurance, living in a country with national health that has a long waiting line regarding getting imaging studies/tests done, lack of a support system from family, incredulous doctors ("psychosomatic"), etc. I have dealt with all of the above (except national health) in the past 12 1/2 years and I still don't have a dx, though hopefully that is going to change soon.
I try to put things in perspective. I figure I have whatever I have, so it's not going to be a complete shock to me if I am told by the doctors that I have MS, because I have thought for years that my symptoms were consistent with either MS or some kind of connective tissue disease. I already know that I am sick and that my symptoms are not normal and nice to live with (some definitely worse than others). However, the doctors have refused to believe that my symptoms were anything other than psychosomatic due to their ignorant biases and because as of 2002 my brain MRI was still normal. Thanks to a recent dx of severe gastroparesis I am finally being taken more seriously (now they at least know something neuro is going on) and I am going in two weeks for an MS evaluation at Mayo (was supposed to go in November but they re-scheduled it). Doctors don't believe what they can't see, but as soon as they can see it they start to become "believers." If you do have MS at least they saw a lesion on MRI and you won't have to deal with all this other extraneous nonsense taking years out of your life and money wasted as well.
So as bad as MS can be (though I realize it's different for everyone who has it), there are worse things, though I know that probably doesn't sound like much comfort right now to you.
Although I hope you don't have MS and never get another lesion on MRI, if you do have it it's better to know sooner than later in my opinion, so it's good that you are going for regular check-ups. That way you can treat it early-if you choose to do so-with disease-modifying drugs that hopefully will lead to fewer relapses in the future. At least you are being followed every six months to see if there are any changes/new lesions on MRI and hopefully the time spent before you get a definitive diagnosis will help you to come to terms/acceptance with the possibility that you might have MS if that is what the doctors are thinking. It is also nice to have a diagnosis, whatever it is, just for the simple fact that there isconsideration and acknowledgement from others that you are indeed sick. When you aren't given a diagnosis go go along with your symptoms you feel as though others don't believe your symptoms are real, that you couldn't possibly feel as sick/distressed as you do.
I know the wait to see what is going to show up is hard, but there are actually people who have symptoms consistent with MS who have been trying to get a diagnosis for 10+ years (I am one of them and SultrySkies is too) but haven't been able to either due to lack of money/health insurance, living in a country with national health that has a long waiting line regarding getting imaging studies/tests done, lack of a support system from family, incredulous doctors ("psychosomatic"), etc. I have dealt with all of the above (except national health) in the past 12 1/2 years and I still don't have a dx, though hopefully that is going to change soon.
I try to put things in perspective. I figure I have whatever I have, so it's not going to be a complete shock to me if I am told by the doctors that I have MS, because I have thought for years that my symptoms were consistent with either MS or some kind of connective tissue disease. I already know that I am sick and that my symptoms are not normal and nice to live with (some definitely worse than others). However, the doctors have refused to believe that my symptoms were anything other than psychosomatic due to their ignorant biases and because as of 2002 my brain MRI was still normal. Thanks to a recent dx of severe gastroparesis I am finally being taken more seriously (now they at least know something neuro is going on) and I am going in two weeks for an MS evaluation at Mayo (was supposed to go in November but they re-scheduled it). Doctors don't believe what they can't see, but as soon as they can see it they start to become "believers." If you do have MS at least they saw a lesion on MRI and you won't have to deal with all this other extraneous nonsense taking years out of your life and money wasted as well.
So as bad as MS can be (though I realize it's different for everyone who has it), there are worse things, though I know that probably doesn't sound like much comfort right now to you.
I understand where you are coming from. I have had symptoms beginning 12 years ago...clear MRI but do believe that this is what I have...I did not have and dye with my mri and there are other tests to help diagnose MS...but you will learn that sometimes a diagnosis is a LONG LONG LONG journey...some people never know for sure...and you may never have the MS you picture in your mind...you may have the head shakes and that is it...it is a very very mysterious disease and EVERYONE suffers from the same stuff but it is always different in some way. I am treating my symptoms symptomatically...baclofen for spasticity..and have propanolol for tremors but have not taken it yet...tremors are not debilitating but flare up. There is no way to accept the fact you may have a chronic illness but learn about it and you will get way more power...and keep posting on here and people will help you out...I hate this saying but you are not alone...even if it feels like you are alone fighting this...there are people who don't even know you that can understand and relate to your physical and emotional hell...so if you are having a tuff day dealing with it...turn it to help someone else...you can also take Vit B's (esp. B12) and flax seed oil...evening primrose oil...if you want o chat again write back or post again...I will keep my eye open for you...til next time
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