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MS like symptons, no positive diagnosis - what next?
See your prev answer to me(Aug)"what should i do now?"... HISTORY: Scale(1-best 10-worst)CONSTANT:dizziness(10),light headedness(10),weakness in limbs(9),fatigue(7),incoordination(9)(e.g. feel like going to fall),short term memory(6),inability to focus(7), ringing ears(9).SOMETIMES:numbness in left arm(5),tingling (pins/needles) in limbs(5). Symptoms have been increasing over time(years)-coming ang going,now mostly constant and seem to increase after being in heat (e.g. shower, etc). TESTS: MRI(normal),EMG(normal),BAER/Visual(VER)(normal),bloodwork(normal). DIAGNOSIS:Rhumatol.. ruled out Chronic fatigue, fybromalgia,Lymes,etc. Neurologist wants a Spinal Tap next. Plan to get 2nd opinion in Jan from U of Penn (no insur 'til then) NOW WHAT? What else (other than MS) could it be?The only thing not ruled out is MS, despite normal testing. I've read, even the spinal could be normal & still be MS. If so(normal spinal), what should i do next? Doctors seem stumped. Can they treat me for MS without postive diagnosis and see if I respond? They are not giving me/doing anything to make me feel better. No diagnosis either. If normal spinal tap - what next? I cannot care for my 2 small children w/o assistant from family-Thank You for taking the time to help others that are going through difficult times...your words and knowledge are comforting.
Dear 2kidsmom,
I want to add my support to what Nikibug mentioned about a Chiari. All of the symptoms you describe could be consistent with this, although of course that doesn't by any means mean that you have it. The diagnostic categories for a Chiari are shifting, so it's not necessarily an abnormality that will jump out at the radiologist in all cases. Many patients who have ended up with this diagnosis had had their MRI's initially read as normal.
I also agree that when mysterious neurological symptoms continue, one must look at the spinal cord as well as the brain. In addition to MS, there are some potentially serious disorders affecting the spinal cord that are frequently misdiagnosed as MS:
1. Arnold-Chiari Malformation
2. Syringomyelia/syrinx of the spinal cord
3. Arachnoiditis (can be caused by misplaced epidurals during childbirth, spinal anesthesia, blood patches, multiple LP's if blood vessels are nicked, spinal trauma, spinal surgery). This is generally described as a pain syndrome, but in some people (like me) the neurological symptoms are more prominent than the pain.
4. Spinal cord tumors (rare, but they do happen).
All of these disorders can cause numbness, weakness, frequent muscle twitches/fasciculations in many areas of the body, persistent muscle stiffness and tendon tightness, burning pain. The tend to progress slowly over time, unlike other "normal" causes of these symptoms that may resolve on their own. Some of these disorders (like Chiari) are more likely to affect the nerves up at the brainstem, which control functions of the head, face, and neck. Some are more likely to be associated with bowel/bladder/sexual problems. There are many other symptoms that also are associated with each one, but they all present in a range of severity, often with mild symptoms in the beginning.
I don't mean to alarm people, the vast majority of whom have much more benign explanations for their symptoms. I'm just coming from the other perspective, as someone who did end up having a very serious cause of my symptoms (a spinal tumor, and subsequently arachnoiditis). All the disorders listed above are rare, but it has been disturbing to see how easily they're also missed when they do turn up. Even when doctors do MRI's, they may not image the right area, and some of these disorders have to be specifically looked for by someone with experience in the wide range of MRI appearances (especially with Chiari and arachnoiditis).
Sincerely,
Annika
I want to add my support to what Nikibug mentioned about a Chiari. All of the symptoms you describe could be consistent with this, although of course that doesn't by any means mean that you have it. The diagnostic categories for a Chiari are shifting, so it's not necessarily an abnormality that will jump out at the radiologist in all cases. Many patients who have ended up with this diagnosis had had their MRI's initially read as normal.
I also agree that when mysterious neurological symptoms continue, one must look at the spinal cord as well as the brain. In addition to MS, there are some potentially serious disorders affecting the spinal cord that are frequently misdiagnosed as MS:
1. Arnold-Chiari Malformation
2. Syringomyelia/syrinx of the spinal cord
3. Arachnoiditis (can be caused by misplaced epidurals during childbirth, spinal anesthesia, blood patches, multiple LP's if blood vessels are nicked, spinal trauma, spinal surgery). This is generally described as a pain syndrome, but in some people (like me) the neurological symptoms are more prominent than the pain.
4. Spinal cord tumors (rare, but they do happen).
All of these disorders can cause numbness, weakness, frequent muscle twitches/fasciculations in many areas of the body, persistent muscle stiffness and tendon tightness, burning pain. The tend to progress slowly over time, unlike other "normal" causes of these symptoms that may resolve on their own. Some of these disorders (like Chiari) are more likely to affect the nerves up at the brainstem, which control functions of the head, face, and neck. Some are more likely to be associated with bowel/bladder/sexual problems. There are many other symptoms that also are associated with each one, but they all present in a range of severity, often with mild symptoms in the beginning.
I don't mean to alarm people, the vast majority of whom have much more benign explanations for their symptoms. I'm just coming from the other perspective, as someone who did end up having a very serious cause of my symptoms (a spinal tumor, and subsequently arachnoiditis). All the disorders listed above are rare, but it has been disturbing to see how easily they're also missed when they do turn up. Even when doctors do MRI's, they may not image the right area, and some of these disorders have to be specifically looked for by someone with experience in the wide range of MRI appearances (especially with Chiari and arachnoiditis).
Sincerely,
Annika
Hi,
I was wondering when your symptoms started? Did you have them before the birth of your first child? My pregnancy seemed to have triggered mine. I have a few of your symptoms, but a lot I don`t. I doubt you have MS. Try not to worry. My neuro doctor says MS almost always shows up on an MRI, even though theres that 10% that doesn`t, it usually does. I hope you get well soon. Good luck to all...
I was wondering when your symptoms started? Did you have them before the birth of your first child? My pregnancy seemed to have triggered mine. I have a few of your symptoms, but a lot I don`t. I doubt you have MS. Try not to worry. My neuro doctor says MS almost always shows up on an MRI, even though theres that 10% that doesn`t, it usually does. I hope you get well soon. Good luck to all...
hi, I am the one who originally posted the question here. See above for all of my symptoms. Like you alot but not all of my symptoms began after the birth of my second son. I agree it is extreamly frustrating in that we go through all of the testing and still no answers...my son is 18 mos and in that no real answers....everything comes back NORMAL! My weakness is all over bodily weakness(fatigue) but my legs are the real concern of the weakness. I do not have feelings of popping in my legs, but just the fact that I will fall when walking. Since I have not been diagnosed with anything as of yet I can't really help you with the question of ms but I have read alot of ms patients have where their legs will suddenly go out from under them. I hope you and all here find answers soon and peace in the season. 2kidsmom
I notice most of you have had MRI of the brain,perhaps the docs should at least consider spine MRI as ms can manifest there sometimes before the brain. Just an idea and also an experience of a good friend of mine!
Hi all,
I`ve posted on here before, and do often because my symptoms seem to change. 2 weeks after the birth of my daughter, I started having tingling / burning in hands and feet, abnormal sensations and cramping in right wrist, tendons would tense up when I bent down and my muscles twitched. Well most of this has went away except I`m still slightly twitching and the tendons in my left heel still tense up when I bend down, and I still get a slight tingling in that ankle. But I`ve also seemed to have developed a new symptom... My left knee seems to "pop forward" when I`m walking sometimes, and my left leg feels tired continuously, even after rest.Could this be considered weakness? I`ve had a brain MRI- Normal, bloodtest - Normal, strength test- Normal, and a nerve conduction test. The doctor said my nerves were conductin slightly slow, but it was normal. I really didn`t understand that though. Has anyone with MS had any of these symptoms, or anyone who`s just had a baby? I`m frustrated!
I`ve posted on here before, and do often because my symptoms seem to change. 2 weeks after the birth of my daughter, I started having tingling / burning in hands and feet, abnormal sensations and cramping in right wrist, tendons would tense up when I bent down and my muscles twitched. Well most of this has went away except I`m still slightly twitching and the tendons in my left heel still tense up when I bend down, and I still get a slight tingling in that ankle. But I`ve also seemed to have developed a new symptom... My left knee seems to "pop forward" when I`m walking sometimes, and my left leg feels tired continuously, even after rest.Could this be considered weakness? I`ve had a brain MRI- Normal, bloodtest - Normal, strength test- Normal, and a nerve conduction test. The doctor said my nerves were conductin slightly slow, but it was normal. I really didn`t understand that though. Has anyone with MS had any of these symptoms, or anyone who`s just had a baby? I`m frustrated!
Hello Everyone...
I've heard many things here from A to Z... and only a smidgen of actual dx's. Have any of you ever heard of "autoimmune disorder"? Did any of you ever take a flu shot before your symptoms began? Ever heard of CIDP? That's Chronic Inflammatory Demyelinating Polyneuropathy. It seems like there are so many neurological illnesses out there...
Perhaps the answer lies in "genetics"? Perhaps your family is predisposed concerning certain autoimmune disorders? Familial history is real important, so check it out.
Take care All.
I've heard many things here from A to Z... and only a smidgen of actual dx's. Have any of you ever heard of "autoimmune disorder"? Did any of you ever take a flu shot before your symptoms began? Ever heard of CIDP? That's Chronic Inflammatory Demyelinating Polyneuropathy. It seems like there are so many neurological illnesses out there...
Perhaps the answer lies in "genetics"? Perhaps your family is predisposed concerning certain autoimmune disorders? Familial history is real important, so check it out.
Take care All.
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