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Heartshome My Story Oct. 10 2007
Hello, I just found this site and it looks very helpful. I"m not sure that this is posted in the correct place, but feel free to move it or inform me if I'm wrong.
I am 48 and have been having strange symptoms for about 8 years. I was working at a very high-stress job and would notice that my foot would get numb after a stressful meeting. I shrugged it off until it started happening in both feet. I could feel things, but my feet and then my hands would get tingly and numb (like coming out of novacaine at the dentists) halfway up my legs and arms. My PCP sent me to a neuro who did all the blood tests to rule out the many other diseases, and an EMG which was normal. I had a MRI with/wout contrast and it was clear. He told me that lots of people have numbness and not to worry about it. I blew it off and went on with life. a couple years later, it started bothering me again. My doc thought it might be Lupus, so off I went to the Rhem dr. who did a complete workup and told me I was fine. Hmmmm. About six months ago, I noticed that the back of my lower legs had a perm. purple mottling on them. My doctor told me it was Livido Reticularsis, which is indiciative of an autoimmune disease. He thought that it was likely related to all my other problems. Over this period, I had noticed a great deal of weakness in my hands. I had a hard time opening jars, dropping things, etc. The joints in my ankles and wrists bother me alot. Also, my short term memory is very bad, I have lost my ability to multi-task, and my cognitive abilities are noticeably reduced. I used to be a Advertising Exec.--I could never do that work again. I can barely remember my appointments! About three months ago, my hands suddenly became much worse. I had almost no ability to pinch my fingers together, or use them in a meaningful way. My balance became terrible and I was dizzy with a buzzing feeling in my head. My feet and legs felt very heavy, and I trip frequently when walking. I tend to drag my toes now and then. I had to touch the walls in the hallway to walk, going upstairs was diffcult, etc. I felt like I walked like Franenstein and my husband jokingly told me that I sometimes looked drunk. I went back to my doctor who did the neuro exam. My right foot reflex was bad (Babinski's?) and right leg was a bit stronger than normal. I failed the "walking the line" test badly. He tells me that I have something neurological going on but he has run out of things to test for. He believes that I am ill though and sends me for another MRI with/wout. He thinks I probably have MS. The MRIs come back clear. My blood work had a few little weird things, but not of consequence. It appears that they have ruled out all the other nasty diseases that could be causing my symptoms, but since my MRI is clear, no diagnosis. My doctor tells me not to be in a hurry for a diagnosis, but it's driving my crazy not knowing what is wrong with me. Perhaps it can't be fixed, but what if it could be? So, I'm eating a very lowfat diet filled with natural, whole foods, resting, and trying to keep away from stress which sends me into symptom land every time.
Any ideas, input would be very welcome!
I am 48 and have been having strange symptoms for about 8 years. I was working at a very high-stress job and would notice that my foot would get numb after a stressful meeting. I shrugged it off until it started happening in both feet. I could feel things, but my feet and then my hands would get tingly and numb (like coming out of novacaine at the dentists) halfway up my legs and arms. My PCP sent me to a neuro who did all the blood tests to rule out the many other diseases, and an EMG which was normal. I had a MRI with/wout contrast and it was clear. He told me that lots of people have numbness and not to worry about it. I blew it off and went on with life. a couple years later, it started bothering me again. My doc thought it might be Lupus, so off I went to the Rhem dr. who did a complete workup and told me I was fine. Hmmmm. About six months ago, I noticed that the back of my lower legs had a perm. purple mottling on them. My doctor told me it was Livido Reticularsis, which is indiciative of an autoimmune disease. He thought that it was likely related to all my other problems. Over this period, I had noticed a great deal of weakness in my hands. I had a hard time opening jars, dropping things, etc. The joints in my ankles and wrists bother me alot. Also, my short term memory is very bad, I have lost my ability to multi-task, and my cognitive abilities are noticeably reduced. I used to be a Advertising Exec.--I could never do that work again. I can barely remember my appointments! About three months ago, my hands suddenly became much worse. I had almost no ability to pinch my fingers together, or use them in a meaningful way. My balance became terrible and I was dizzy with a buzzing feeling in my head. My feet and legs felt very heavy, and I trip frequently when walking. I tend to drag my toes now and then. I had to touch the walls in the hallway to walk, going upstairs was diffcult, etc. I felt like I walked like Franenstein and my husband jokingly told me that I sometimes looked drunk. I went back to my doctor who did the neuro exam. My right foot reflex was bad (Babinski's?) and right leg was a bit stronger than normal. I failed the "walking the line" test badly. He tells me that I have something neurological going on but he has run out of things to test for. He believes that I am ill though and sends me for another MRI with/wout. He thinks I probably have MS. The MRIs come back clear. My blood work had a few little weird things, but not of consequence. It appears that they have ruled out all the other nasty diseases that could be causing my symptoms, but since my MRI is clear, no diagnosis. My doctor tells me not to be in a hurry for a diagnosis, but it's driving my crazy not knowing what is wrong with me. Perhaps it can't be fixed, but what if it could be? So, I'm eating a very lowfat diet filled with natural, whole foods, resting, and trying to keep away from stress which sends me into symptom land every time.
Any ideas, input would be very welcome!
Welcome back from your vacation. The Oregon coast is very beautiful. Hope you had a great time. Could you put me on your schedule to talk to? I have a long-winded bio above. But this past week I'm getting strange fatique again. My lower arms/hands just get so tired that it makes my whole body exhausted. I simply have to go to bed, it's the only thing that helps. My husband thinks it's because I painted my Mom's little bathroom and that if I would go to the gym I'd feel better. But I absolutely can't go work out. (It's not that he's uncaring, I think he's scared and in denial.)
Hi! and welcome to our world. Strange place but its the one we live in.
Neurological disorders are sometime difficult to diagnose but not impossible. A lot of tests are done as you know to simply rule out other conditions. Neurologists are reluctant to make a leap and diagnose MS without supporting symptoms. Sometimes even with those symptoms they won't make the call. The McDonald's Criteria establishes certain conditions that should be meet to be diagnosed with MS. But thats after they have ruled out other conditions because there is no 100% you've got MS test.
Because of that, they wait, and wait, and send you for countless tests and sometimes treatments for things like depression. That takes time and sometimes years which in my mind is BS.
Getting a neuro appointment for me is not difficult, I just have to wait 3-4 months to get in. I can self refer for a specialist with my insurance, I'm sure they are all different. And yes, sadly, medical care, treatment, and diagnostic equipment can be significantly different from area to area.
Continue to be your own advocate. If you don't feel well push them for an answer and treatment. If that doesn't work push some more. What really is to bad is that it can take years and in the time in between you continue to feel terrible and think your dying or crazy.
Good luck, stick around, and be vocal!
Johnny
Neurological disorders are sometime difficult to diagnose but not impossible. A lot of tests are done as you know to simply rule out other conditions. Neurologists are reluctant to make a leap and diagnose MS without supporting symptoms. Sometimes even with those symptoms they won't make the call. The McDonald's Criteria establishes certain conditions that should be meet to be diagnosed with MS. But thats after they have ruled out other conditions because there is no 100% you've got MS test.
Because of that, they wait, and wait, and send you for countless tests and sometimes treatments for things like depression. That takes time and sometimes years which in my mind is BS.
Getting a neuro appointment for me is not difficult, I just have to wait 3-4 months to get in. I can self refer for a specialist with my insurance, I'm sure they are all different. And yes, sadly, medical care, treatment, and diagnostic equipment can be significantly different from area to area.
Continue to be your own advocate. If you don't feel well push them for an answer and treatment. If that doesn't work push some more. What really is to bad is that it can take years and in the time in between you continue to feel terrible and think your dying or crazy.
Good luck, stick around, and be vocal!
Johnny
Does anyone else have problems getting a neuro appt? Although my insurance does not have a "gatekeeper" clause, my health care provider's system will not allow you to see a specialist unless you've been referred by your PCP. That's ridiculous! I'd like to try another system, but wonder if it's the same everywhere????
I have been dealing with neurological problems for the past 9 years and have dealt with the same thing as you. My gp just told me last week that I have ms and he doesn't care if the tests come back negative but the unfortunate thing is that he cannot treat me so I have to see a neurologist on the 18th to go through the tests again. If I were you I would see another neurologist that cares about your situation and fire your last one. 3 months is ridiculous to get an appointment!!! I would call all of the different neurologists until you can get an appointment. There has been people on this forum that has been diagnosed with ms when all of their tests came back negative except for the evoked potentials (eye test) or spinal tap. If the doctor did not do those tests how can they rule out anything? Trust me I know what you are going through and keep knocking down the doctors door until they do something!!! I wish for once that these inconsiderate doctors would experience what we are going through for one week instead of saying I think you need to see a psychiatrist.
I had a nerve conduction test - normal. Also I "think" that I was tested for CFS, since they have ruled out practically any and all other mimicing diseases. (Also tested for diabetes, B12, yada, yaday, yada.) The last neur. I went to I waited three months for my appt. and took my husband with me. The doctor essentially blew me off in five minutes. My husband was furious, as he's a tough, no-nonsense guy and knew that I was having real problems that needed addressing.He is very worried, as am I. Thanks for your input!
Hello,
Your Neuro needs to do the evoked potentials and a nerve conduction study test. Mri's and emg are not the only tests to do. Also it might benefit you to have a spinal tap. I have chronic fatigue because I have the epstein-barr virus. Have you been tested for that?
Your Neuro needs to do the evoked potentials and a nerve conduction study test. Mri's and emg are not the only tests to do. Also it might benefit you to have a spinal tap. I have chronic fatigue because I have the epstein-barr virus. Have you been tested for that?
Oops, I forgot to mention that at times I suffer from extreme fatique. I can barely drag myself out of bed. I'm an active person but find that I tire so easily that even taking my dog for a walk around the block is not possible without resting. Also, I have a diffcult time finding the right word to say and sometimes say the wrong word entirely, but it usually rhymes with the word I wanted to use! (That can be amusing!)
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