Aa
Confused.
I have been reading the posts in this forum frantically since the middle of the night. It's really kind of comforting to read people (and many women) with the same experiences and symptoms as mine. I started having muscle spasms and "myoclonic seizures" 7 years ago with severe migraines (lasting 6 weeks at one point). A year and a half ago I started having severe pain in my eyes and changes in my vision but was told that my eyes were normal. I had severe facial pain (which I have had consistently for a year and a half) which I was told was a "sinus infection".
I have seen so many doctors like many of you, rheumatologists (no RA), cardiologist, endocrinologist, physical medicine doctors and neurologists. The thing that I haven't really read on here but that I know must happen is "good days and bad days".
What I mean is, I have days where the cramping, heaviness, numbness, burning and tingling/buzzing in my legs is so much it's very hard to walk. Then the next week after resting a lot I feel better. Some days my balance sucks but when then weeks later when I can get into my neurologist, it's not as bad. I often think because the spreading out of visits to doctors and the changing in my symptoms, they think I'm a nut case. Though there is some evidence of lesions on the thoracic spine and blood tests with elevated white blood cells and inflamation (to name a few things), I'm still being bounced from one doctor to another.
How do y'all cope with the changes in your symptoms? It's been a frustrating year and a half with a lot of dreadful pain and difficulty getting on with my life but I have read many of you have struggled for years and some still do not have a difinitive diagnosis! I fear that I will loose my mind by that point.
The best news lately is that after I brought back findings to my doctor of lesions on the thoracic spine and she could see how much worse I had gotten since last I saw her, she indicated she would "run some things" past my neurologist. No one has mentioned MS yet but they have tested for everything else and all they come up with are strange items like the spinal issues, the blood tests and they physical symptoms.
I have to commend y'all for being so positive and coping so well! It's been hard for me to be in "limbo land" all this time with no real support from family or friends ... they don't understand or they give me a weird pittying attitude. My co-workers have been kind to me but I feel that I can't really talk to them because it makes working difficult (as if it isn't already almost impossible now). The only friend I really have to talk about this with lives out-of-state and he's expressed that it stresses him out to hear about it and he feels helpless so he won't even talk about it with me. I haven't had any where else to turn.
I'm really curious how you all deal with the variances in symptoms and the numerous doctors.
God bless,
kimberly
I have seen so many doctors like many of you, rheumatologists (no RA), cardiologist, endocrinologist, physical medicine doctors and neurologists. The thing that I haven't really read on here but that I know must happen is "good days and bad days".
What I mean is, I have days where the cramping, heaviness, numbness, burning and tingling/buzzing in my legs is so much it's very hard to walk. Then the next week after resting a lot I feel better. Some days my balance sucks but when then weeks later when I can get into my neurologist, it's not as bad. I often think because the spreading out of visits to doctors and the changing in my symptoms, they think I'm a nut case. Though there is some evidence of lesions on the thoracic spine and blood tests with elevated white blood cells and inflamation (to name a few things), I'm still being bounced from one doctor to another.
How do y'all cope with the changes in your symptoms? It's been a frustrating year and a half with a lot of dreadful pain and difficulty getting on with my life but I have read many of you have struggled for years and some still do not have a difinitive diagnosis! I fear that I will loose my mind by that point.
The best news lately is that after I brought back findings to my doctor of lesions on the thoracic spine and she could see how much worse I had gotten since last I saw her, she indicated she would "run some things" past my neurologist. No one has mentioned MS yet but they have tested for everything else and all they come up with are strange items like the spinal issues, the blood tests and they physical symptoms.
I have to commend y'all for being so positive and coping so well! It's been hard for me to be in "limbo land" all this time with no real support from family or friends ... they don't understand or they give me a weird pittying attitude. My co-workers have been kind to me but I feel that I can't really talk to them because it makes working difficult (as if it isn't already almost impossible now). The only friend I really have to talk about this with lives out-of-state and he's expressed that it stresses him out to hear about it and he feels helpless so he won't even talk about it with me. I haven't had any where else to turn.
I'm really curious how you all deal with the variances in symptoms and the numerous doctors.
God bless,
kimberly
I'm sorry I didn't see your post before I posted my last message. We must have hit the button at the same time!
I certainly didn't want you to feel you have to comfort me! I'm really fine, especially after the nap I just took.
I'm sorry you're having such a frustrating time with doctors. Don't worry about reading the test results on your own; that's what we have doctors for. I would, however make sure to get copies of all the test results you have done. Not so you can obsess about what each tiny "out of range" abnormality may show up, but because this is a picture of yuor health, which may help another doctor in the future, should you need to move on.
The Mayo Clinic experience can't have been fun. I was sent to a psychiatrist once, when my first round of MRIs came out normal. No other testing. I tried to tell my doc about my symptoms, and you could just see in his eyes, he thought I was psychotic.
So, I did see the psychiatrist, who told me I needed a thorough neuro work-up!
Being a drama queen is fine, I am one and gave birth to a few myself. But this crying daily is something you should think about. Seeing the psychiatrist is one of the best things I have done for my diagnosis, I think. It kind of gave me a "pass" on that accusation from the other neuros I have seen. But, also, the psychiatrist told me to make an appointment any time I thought I needed to talk about this arduous journey to diagnosis. Just to talk.
Maybe it would be helpful for you to share with a friend who would be empathetic about what you're going through. (My husband has a hard time talking about my health, too. He just wants me back the way I was.) Or perhaps it might not be a bad idea to see a counselor.
I hate to think you're crying each day. Hang in there, and thank you for your nice response.
Hugs,
Zilla*
I certainly didn't want you to feel you have to comfort me! I'm really fine, especially after the nap I just took.
I'm sorry you're having such a frustrating time with doctors. Don't worry about reading the test results on your own; that's what we have doctors for. I would, however make sure to get copies of all the test results you have done. Not so you can obsess about what each tiny "out of range" abnormality may show up, but because this is a picture of yuor health, which may help another doctor in the future, should you need to move on.
The Mayo Clinic experience can't have been fun. I was sent to a psychiatrist once, when my first round of MRIs came out normal. No other testing. I tried to tell my doc about my symptoms, and you could just see in his eyes, he thought I was psychotic.
So, I did see the psychiatrist, who told me I needed a thorough neuro work-up!
Being a drama queen is fine, I am one and gave birth to a few myself. But this crying daily is something you should think about. Seeing the psychiatrist is one of the best things I have done for my diagnosis, I think. It kind of gave me a "pass" on that accusation from the other neuros I have seen. But, also, the psychiatrist told me to make an appointment any time I thought I needed to talk about this arduous journey to diagnosis. Just to talk.
Maybe it would be helpful for you to share with a friend who would be empathetic about what you're going through. (My husband has a hard time talking about my health, too. He just wants me back the way I was.) Or perhaps it might not be a bad idea to see a counselor.
I hate to think you're crying each day. Hang in there, and thank you for your nice response.
Hugs,
Zilla*
Because many autoimmune disease symptoms overlap, it sure does make it confusing! I've been down that same limboland road going from specialist to another. I've just been recently diagnosed, and there's a sense a calmness that I feel like I've never felt in years.
I too have gone to an endocrinologist and cardiologist (among just a few). I have thyroid disease, high blood pressure, an irregular heart beat, migraines, etc. After beging treated for hypothyroidism, I began to feel better . . . at least for a while. I also have had some positive tests and symptoms that indicate the posibility for lupus (elevated sedimentation rate, positive ANA, C-reactive protein). I went down the rheumatological road for years. I was later diagnosed with fibromyalgia, Raynaud's, and reactive arthritis.
I've also been to more than one neurologist (one for migraines, one for MS-like symptoms that I fired, and one that I'm seeing now).
My latest and greatest neurologist, told me after the diagnosis, that some of my doctors were "lazy". He also said that the fibromyalgia diagnosis, in my case, was totally bogus and said basically the same thing the Mayo doctors said.
Some of your symptoms do sound not specific to MS (like the seizures), but many of them do. I can see why you, like me, have had a difficult time of things. However, just because some of your symptoms don't neatly fit with MS, doesn't mean you don't have it. Many people with one autoimmune disease, like myself, have other ones.
Some lady that I work with has lupus that has effected her central nervous system. She also has some other overlap MS symptoms--foot drop, numbness, tingling, etc.
I have a theory about MS, but I'm not a doctor (I'm only speaking from my experience and what I've read in books about MS, thyroid disease, and lupus and having at least two autoimmune diseases), that autoimmune diseases have a common thread. I think that sometimes it overlaps with other diseases and sometimes people live in a static autoimmune state until it desides which disease it wants to become. I think it was that way in my case, anyway. I didn't start developing many serious MS-like symptoms until years later, but have been sick for many, many years.
I know you're frustrated, because I've been there. This is an excellent place to talk to others who are going through many of the same things you are. Know that you're aren't alone!
I hope you get some answers soon,
Deb
I too have gone to an endocrinologist and cardiologist (among just a few). I have thyroid disease, high blood pressure, an irregular heart beat, migraines, etc. After beging treated for hypothyroidism, I began to feel better . . . at least for a while. I also have had some positive tests and symptoms that indicate the posibility for lupus (elevated sedimentation rate, positive ANA, C-reactive protein). I went down the rheumatological road for years. I was later diagnosed with fibromyalgia, Raynaud's, and reactive arthritis.
I've also been to more than one neurologist (one for migraines, one for MS-like symptoms that I fired, and one that I'm seeing now).
My latest and greatest neurologist, told me after the diagnosis, that some of my doctors were "lazy". He also said that the fibromyalgia diagnosis, in my case, was totally bogus and said basically the same thing the Mayo doctors said.
Some of your symptoms do sound not specific to MS (like the seizures), but many of them do. I can see why you, like me, have had a difficult time of things. However, just because some of your symptoms don't neatly fit with MS, doesn't mean you don't have it. Many people with one autoimmune disease, like myself, have other ones.
Some lady that I work with has lupus that has effected her central nervous system. She also has some other overlap MS symptoms--foot drop, numbness, tingling, etc.
I have a theory about MS, but I'm not a doctor (I'm only speaking from my experience and what I've read in books about MS, thyroid disease, and lupus and having at least two autoimmune diseases), that autoimmune diseases have a common thread. I think that sometimes it overlaps with other diseases and sometimes people live in a static autoimmune state until it desides which disease it wants to become. I think it was that way in my case, anyway. I didn't start developing many serious MS-like symptoms until years later, but have been sick for many, many years.
I know you're frustrated, because I've been there. This is an excellent place to talk to others who are going through many of the same things you are. Know that you're aren't alone!
I hope you get some answers soon,
Deb
girls we are in the same boat.I'm so thankful to you guys for sharing your stories and struggles,i feel so less alone.my symptoms are not so severe.i have tingles, weakness,fatigue.my worst symptom, and the one that has me on the dx run is my head pain,its been with me daily for 2 1/2 years.on pain meds,been to 3 neros,had MRIs.LP,blood work x10,dxed with fibro and possiable Ms.
I cry nearly everyday it seems, mostly alone, as i try to nap and recharge.
I also have asked and received prayer,i also feel god is working,but still also feel Hes showing me to wait.I also have the wonderful faces and lifes of my sons to remind me how much i have been blessed !
I am thankful for finding this forum,and all such as you girls,whos strenght and courage and encouragement find, and fill me with hope and beleif
I cry nearly everyday it seems, mostly alone, as i try to nap and recharge.
I also have asked and received prayer,i also feel god is working,but still also feel Hes showing me to wait.I also have the wonderful faces and lifes of my sons to remind me how much i have been blessed !
I am thankful for finding this forum,and all such as you girls,whos strenght and courage and encouragement find, and fill me with hope and beleif
I am new to this forum and to messaging in general. I was given the thought just a few days ago to start sharing on message boards - so I am listening to that voice from within. My heart goes out to all of you! I was diagnosed with MS over 20 years ago. I was paralyzed on my left side and had to go through many misdiagnoses and 5 neurologists. One even told me it was in my head and sent me home with valium so I understand your frustrations. Back then there was no treatment only steroids which I had terrible side effects from. This lead me on a quest for knowledge of MS and I also began investigating alternative therapies. I have managed by MS and relapse episodes successfully with nutrition changes, food supplements, exercise, massage, and Reiki. I used to run before my diagnosis and 15 years ago I began to run again and continue today. I work fulltime and am a wife and mother of a 20 year old son and 30 year old step son. I tell you this to give you hope and in the hope that you follow your inner voice and take action. If anyone wants to chat more I'm here.
Peace & Health,
jglow
Janet
Peace & Health,
jglow
Janet
e- Your message means a lot. Thanks. I'm fine, really. Sometimes just need a good cry. Going upstairs for a little while to do a little more, and then it'll be done with.
Thanks for writing.
Kim~ Hang tough!
*
Zilla*
Thanks for writing.
Kim~ Hang tough!
*
Zilla*
No one has talked to me about a sedimentation rate and I'm not sure what that indicates. Many of my blood tests have come back normal except for the thyroid (Hashimoto's disease), the strangely elevated white blood cells and the inflamation. They keep telling me I must have an infection but they can't tell me what kind of where. My doctor freaks out a lot and doesn't seem like she's able to explain to me a lof the tests.
I've had a cadiology work up, rheumatology tests, endocrinolgy (bone density, thyroid ultrasound), I've had abdominal ultra sounds, nerve conduction study, numerous xrays of the body (including more detailed spinal xrays which I never saw or recieved the report from), neurological exams from three neurologists.
One thing I have not become adept at is reading or understanding any of my blood tests. I believed so long that my doctor would take care of things and I would just do what she said. Then I found I was just seeing so many specialists and having so many tests with no answers. I finally went to the Mayo Clinic but they told me b/f they saw me my symptoms were too "non-specific" and a nurse even told me to leave out most of my symptoms before seeing the doctor because he wouldn't believe me. At the end, the didn't do a lot of tests I would have thought they would have and then they told me that FMS is a "blanket term for non-specific symptoms". *tears hair out*
Zilla:
Thank you, I really can understand where you're coming from. After seeing my doctor last Tuesday and being sent home with new pain meds and orders to stay in bed until I'm feeling a bit better/meds are working/neurologist has been contacted, I still went to work PT (I'm an insurance agent and my job is pretty much all I have). I ended up leaving work in tears which I didn't even know where coming. I can't stop myself from crying much of the time and feel like a huge drama queen. I really know how you feel. I have asked for prayers too, it seems like the only thing any one can provide.
Essdipity:
I'm seeing a lot of really friendly and supportive people here. I can say just since I found the forums this morning, I already feel more hopeful and that I have people who understand and I can share my feelings with. It hurts not being able to tell my significant other (who is out-of-state) because I know it upsets him and he just ignores it or changes the subject. I want to share with him but I can't and I fear it's taking a toll on our relationship which besides my job, that's all I have. I have no children, my family is out-of-state and currently dealing with my step-grandmother's illness so they really aren't talking to me. I feel so alone.
Thanks all for responding, I reall am starting to feel a little less crazy and that I'm not alone in all this confusion!
hugs - kimberly
I've had a cadiology work up, rheumatology tests, endocrinolgy (bone density, thyroid ultrasound), I've had abdominal ultra sounds, nerve conduction study, numerous xrays of the body (including more detailed spinal xrays which I never saw or recieved the report from), neurological exams from three neurologists.
One thing I have not become adept at is reading or understanding any of my blood tests. I believed so long that my doctor would take care of things and I would just do what she said. Then I found I was just seeing so many specialists and having so many tests with no answers. I finally went to the Mayo Clinic but they told me b/f they saw me my symptoms were too "non-specific" and a nurse even told me to leave out most of my symptoms before seeing the doctor because he wouldn't believe me. At the end, the didn't do a lot of tests I would have thought they would have and then they told me that FMS is a "blanket term for non-specific symptoms". *tears hair out*
Zilla:
Thank you, I really can understand where you're coming from. After seeing my doctor last Tuesday and being sent home with new pain meds and orders to stay in bed until I'm feeling a bit better/meds are working/neurologist has been contacted, I still went to work PT (I'm an insurance agent and my job is pretty much all I have). I ended up leaving work in tears which I didn't even know where coming. I can't stop myself from crying much of the time and feel like a huge drama queen. I really know how you feel. I have asked for prayers too, it seems like the only thing any one can provide.
Essdipity:
I'm seeing a lot of really friendly and supportive people here. I can say just since I found the forums this morning, I already feel more hopeful and that I have people who understand and I can share my feelings with. It hurts not being able to tell my significant other (who is out-of-state) because I know it upsets him and he just ignores it or changes the subject. I want to share with him but I can't and I fear it's taking a toll on our relationship which besides my job, that's all I have. I have no children, my family is out-of-state and currently dealing with my step-grandmother's illness so they really aren't talking to me. I feel so alone.
Thanks all for responding, I reall am starting to feel a little less crazy and that I'm not alone in all this confusion!
hugs - kimberly
Zil, you're having such a bad day! I'm SO sorry. If I could come and buck you up I sure would. Life sucks sometimes for sure.
And Kim, please hang in here too. We'll do our best.
ess
And Kim, please hang in here too. We'll do our best.
ess
Hi, Kimberly!
While it's nice to be commended for lasting in Limbo for so long, I must admit that it's one of the harder things I have had to do. This timing is so funny. My husband travels a lot lately for his work, and was just getting ready to leave for out of state after being home for just the weekend.
I asked to to come up in our room, to talk. So we laid down, and I started to sob. I'm just so sick of being sick and not knowing what's wrong with me. My legs are getting weaker again, and my dizziness is in full force. I'm now seeing my SIXTH neurologist, and I'm sad to say that's no record here. I feel some hope with this new neuro, but still my tests -- almost every one of them - comes back normal.
And, still my weakness is returning, and other symptoms, especially fatigue, are rearing their ugly heads. So, I spent some time sobbing with my husband a bit ago. And, being male, my husband tried his best to "fix it" for me. Why don't we go to a new doctor? Go back to an old one who had diagnosed me with a brain infection (even though this makes NO sense to my new doc, or to Quix, whom I trust.)? I know I have to give the new doc some time to figure this out. I've only seen him twice. But, still, the tears just poured today.
My pastor spoke today about a little girl in our congregation who had a very serious illness. Her needs for healing were addressed by our Prayer Circle, and God healed her. That very night she began to get better.
So, I will admit, too, that I emailed my pastor this afternoon, and asked that I may have a diagnosis soon. I don't know why I find that hard to admit. I know these people will pray for me. I was hesitant to even ask, because I'm sort of not wanting to ruin their reputation for good results. At times, I feel hopeless. I have doubt, and hope that my diagnosis will come. I don't want the prayer group to feel badly if God continues to say, "Wait."
Anyway, I just responded because I want you to know that it's hard for all of us. Most of the time, I can get on with my life, enjoy the things God has blessed me with. Even the littlest moments. A glimpse of a certain look on one of my boys' faces. Bigger things, too, like the better fortune we're having with job security while others do not. I'm thankful I do not suffer the disability many others on the forum endure.
It is hard. MS is difficult to diagnose in a lot of cases. Give yourself and your doctor some time to sort it all out. In the mean time, that's what this forum is for. Complain until you can't complain anymore. I've done it and gotten just the support I need.
We're here for you.
Zilla*
While it's nice to be commended for lasting in Limbo for so long, I must admit that it's one of the harder things I have had to do. This timing is so funny. My husband travels a lot lately for his work, and was just getting ready to leave for out of state after being home for just the weekend.
I asked to to come up in our room, to talk. So we laid down, and I started to sob. I'm just so sick of being sick and not knowing what's wrong with me. My legs are getting weaker again, and my dizziness is in full force. I'm now seeing my SIXTH neurologist, and I'm sad to say that's no record here. I feel some hope with this new neuro, but still my tests -- almost every one of them - comes back normal.
And, still my weakness is returning, and other symptoms, especially fatigue, are rearing their ugly heads. So, I spent some time sobbing with my husband a bit ago. And, being male, my husband tried his best to "fix it" for me. Why don't we go to a new doctor? Go back to an old one who had diagnosed me with a brain infection (even though this makes NO sense to my new doc, or to Quix, whom I trust.)? I know I have to give the new doc some time to figure this out. I've only seen him twice. But, still, the tears just poured today.
My pastor spoke today about a little girl in our congregation who had a very serious illness. Her needs for healing were addressed by our Prayer Circle, and God healed her. That very night she began to get better.
So, I will admit, too, that I emailed my pastor this afternoon, and asked that I may have a diagnosis soon. I don't know why I find that hard to admit. I know these people will pray for me. I was hesitant to even ask, because I'm sort of not wanting to ruin their reputation for good results. At times, I feel hopeless. I have doubt, and hope that my diagnosis will come. I don't want the prayer group to feel badly if God continues to say, "Wait."
Anyway, I just responded because I want you to know that it's hard for all of us. Most of the time, I can get on with my life, enjoy the things God has blessed me with. Even the littlest moments. A glimpse of a certain look on one of my boys' faces. Bigger things, too, like the better fortune we're having with job security while others do not. I'm thankful I do not suffer the disability many others on the forum endure.
It is hard. MS is difficult to diagnose in a lot of cases. Give yourself and your doctor some time to sort it all out. In the mean time, that's what this forum is for. Complain until you can't complain anymore. I've done it and gotten just the support I need.
We're here for you.
Zilla*
Hello and Welcome to our Cyber Family. Thank you for sharing your story. You have been through a great deal and we all are here for you. Your dr's need to set up a plan of action and get on the same page instead of sending you to other dr's. I know they think they are helping but it is very hard to explain over and over what symptoms your having or bizarre new ones.
I am in Limbo myself and have been thrown about in the medical community as well. I go see my first neuro tommorrow. I have a lot of the same problems and I feel for you girl. The leg thing is a particularly a hard one for me because I use to walk at least 12 miles a day and now I can barely make it to the car. I have to use a cane and a wheelchair if I'm going to the huge medical center.
It's not an easy thing to swallow being challenged by your body. Before I found this forum I felt alone, my husband who I love dearly just doesn't want to accept that I'm sick. So instead of talking to him about things, I talk to my friends here, they truly understand me.
It is very frustrating going from dr to dr and getting no answers. Do you have a high sedimentation rate? What other tests have they done for you? I am very curious, so forgive me if I sound a little nosey. Please keep us posted...You have friends here.
Hugs,
Spazie Ada
I am in Limbo myself and have been thrown about in the medical community as well. I go see my first neuro tommorrow. I have a lot of the same problems and I feel for you girl. The leg thing is a particularly a hard one for me because I use to walk at least 12 miles a day and now I can barely make it to the car. I have to use a cane and a wheelchair if I'm going to the huge medical center.
It's not an easy thing to swallow being challenged by your body. Before I found this forum I felt alone, my husband who I love dearly just doesn't want to accept that I'm sick. So instead of talking to him about things, I talk to my friends here, they truly understand me.
It is very frustrating going from dr to dr and getting no answers. Do you have a high sedimentation rate? What other tests have they done for you? I am very curious, so forgive me if I sound a little nosey. Please keep us posted...You have friends here.
Hugs,
Spazie Ada
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