Aa
HELP! Parasthesias, weakness, fatigue, fasciculations, imbalance since Aug. '06
Aug '06, finishing degree, under stress. Sitting at computer, big toe going numb, burning, over weeks progressed to other foot, all toes & in months progressed to feet, calves, hands, wrists, forearms. Walking far made foot drag/numb
Hx: 31 yo F Scoliosis 21 deg. w/ spina bifida occulta in L5 and stenosis at L? - neck and back pain common. Was told degenerative disc disease by one Dr., another disagreed. Dry mouth starting Spring '06 - very uncomfortable. Insomnia/anxiety - Zoloft 25mg daily and Ativan 2mg to sleep (for about 1.5 years) but I am definitely not imagining this pain. MVP - mild with PVCs/Chest pain
Constant low blood pressure and low temp. - nurses always ask if I feel ok. 4 yrs ago had virus w/ high fever. As fever inc., so did vertigo sensation & tinnitus when changing gaze in any position. MRI & bloodwork neg. then - dizziness lasted 3/4 months and would send shock sensations w/ "electric" sounding tinnitus when changing gaze, finally subsided. ABR normal, ENG normal. Fam Hx: diabetes, Grave's disease, undiag. neuromuscular dis, rheumatoid arthr.
Now, calves tight, fasciculations all over, jaws weak/tight, fatigued, extremities weak, parasthesias, tremor, imbal
Neuro's workup now:
Labs - all norm, except increased IgG slightly
VEP - norm ABR - norm NCV - norm
MRI - one non-enhancing lesion at splenium of corpus callosum, "could be MS plaque" Compared 4 yo MRI w/ new - same lesion appears - missed on old MRI.
Neuro stumped - referring to rheumatologist for fibromyalgia or get spinal tap or 6 mo MRI? SCARED of what's wrong with me!
So tired
Hx: 31 yo F Scoliosis 21 deg. w/ spina bifida occulta in L5 and stenosis at L? - neck and back pain common. Was told degenerative disc disease by one Dr., another disagreed. Dry mouth starting Spring '06 - very uncomfortable. Insomnia/anxiety - Zoloft 25mg daily and Ativan 2mg to sleep (for about 1.5 years) but I am definitely not imagining this pain. MVP - mild with PVCs/Chest pain
Constant low blood pressure and low temp. - nurses always ask if I feel ok. 4 yrs ago had virus w/ high fever. As fever inc., so did vertigo sensation & tinnitus when changing gaze in any position. MRI & bloodwork neg. then - dizziness lasted 3/4 months and would send shock sensations w/ "electric" sounding tinnitus when changing gaze, finally subsided. ABR normal, ENG normal. Fam Hx: diabetes, Grave's disease, undiag. neuromuscular dis, rheumatoid arthr.
Now, calves tight, fasciculations all over, jaws weak/tight, fatigued, extremities weak, parasthesias, tremor, imbal
Neuro's workup now:
Labs - all norm, except increased IgG slightly
VEP - norm ABR - norm NCV - norm
MRI - one non-enhancing lesion at splenium of corpus callosum, "could be MS plaque" Compared 4 yo MRI w/ new - same lesion appears - missed on old MRI.
Neuro stumped - referring to rheumatologist for fibromyalgia or get spinal tap or 6 mo MRI? SCARED of what's wrong with me!
So tired
Hi Patsy,
I went to Mayo in Dec. and saw an MS specialist. She didn't actually come right out and tell me that she didn't think I had MS, but she said how my symptoms started back in '90/the Horner's syndrome would be a very atypical presentation for MS. She said it sounded more like autoimmune autonomic neuropathy and did an autonomic dysfunction work-up on me as well as brain MRI. Once again MRI was normal. A lot of blood work was done to try to pinpoint the cause of the autonom. neuropathy but every bit of it was negative. In fact my tilt table, SNIF test, and test for urinary retention (I knew that one wouldn't show anything!) were all normal. The only abnormal testing was the sudomotor/QSART test. Apparently I still have hypohidrosis on the left side of my body (residual I assume from the past Horner's). I wasn't even aware that I still sweat less on the left side, as the Horner's ended 14 years ago, but the test picked it up. I was very surprised. Now they know I wasn't imagining the Horner's. I wish I had known in the past what sudomotor tesing was--I would have demanded to have it done--since the idiot neurologist I saw back in '91 never even worked me up for the Horner's other than a CXR and the subsequent neuros I saw never even believed that I had it. Guess that's why they never suggested I have sudomotor tesing done! I only recently read about the test when I started to read on auton. neuropathy after the gastroparesis dx in August. That one test could have saved me years of misery.
Anyway, the neuro sent me a letter saying that the testing confirmed I had autonomic neuropathy and that it was most likely autoimmune in nature, but unfortunately no cause was identified, and she suggested I go back up to see the autonom. dysfunction specialist, see her again and also get an LP to definitively rule out MS. So I found out today I am going up the end of March for that. I haven't gotten a neurologist locally and plan to do that after I get back from Mayo, though I got the name of someone who is supposed to be good (did his residency at the Cleveland Clinic/most of the practice did actually). Luckily there is still a neurology practice left in town that I haven't seen (and been dismissed by).
If you have found out anything more, let me know. Do you still think you have MS or do you think that it might be something else? Have you read much on the connective tissue diseases? I thought for years I had one of those. As you probably know, neuropathy is associated with many of them. What about the suggestions the CCF neuro made about getting tested for mitochondrial disease, etc.? Do you plan to follow up on any of that?
I went to Mayo in Dec. and saw an MS specialist. She didn't actually come right out and tell me that she didn't think I had MS, but she said how my symptoms started back in '90/the Horner's syndrome would be a very atypical presentation for MS. She said it sounded more like autoimmune autonomic neuropathy and did an autonomic dysfunction work-up on me as well as brain MRI. Once again MRI was normal. A lot of blood work was done to try to pinpoint the cause of the autonom. neuropathy but every bit of it was negative. In fact my tilt table, SNIF test, and test for urinary retention (I knew that one wouldn't show anything!) were all normal. The only abnormal testing was the sudomotor/QSART test. Apparently I still have hypohidrosis on the left side of my body (residual I assume from the past Horner's). I wasn't even aware that I still sweat less on the left side, as the Horner's ended 14 years ago, but the test picked it up. I was very surprised. Now they know I wasn't imagining the Horner's. I wish I had known in the past what sudomotor tesing was--I would have demanded to have it done--since the idiot neurologist I saw back in '91 never even worked me up for the Horner's other than a CXR and the subsequent neuros I saw never even believed that I had it. Guess that's why they never suggested I have sudomotor tesing done! I only recently read about the test when I started to read on auton. neuropathy after the gastroparesis dx in August. That one test could have saved me years of misery.
Anyway, the neuro sent me a letter saying that the testing confirmed I had autonomic neuropathy and that it was most likely autoimmune in nature, but unfortunately no cause was identified, and she suggested I go back up to see the autonom. dysfunction specialist, see her again and also get an LP to definitively rule out MS. So I found out today I am going up the end of March for that. I haven't gotten a neurologist locally and plan to do that after I get back from Mayo, though I got the name of someone who is supposed to be good (did his residency at the Cleveland Clinic/most of the practice did actually). Luckily there is still a neurology practice left in town that I haven't seen (and been dismissed by).
If you have found out anything more, let me know. Do you still think you have MS or do you think that it might be something else? Have you read much on the connective tissue diseases? I thought for years I had one of those. As you probably know, neuropathy is associated with many of them. What about the suggestions the CCF neuro made about getting tested for mitochondrial disease, etc.? Do you plan to follow up on any of that?
Hi again Annie. We're the same age too! I can sure relate to what you are saying. I hope someone can figure out what we have....as I sit here twitching, numb, tingly, cold, blue feet etc......I have never even come close to believing it's "all in my head". I know it isn't. I know yours isn't either. When do you see Mayo again, or do you? What more is she going to do to find out what you have?
Patsy, you are right--there is no peace of mind with a negative neuro work-up when you have ongoing unexplained neuro symptoms. I just love the people on this board who say things like "You have a problem if you persist in believing you are ill and can't trust your neurologist," (are they trying to score points with the CCF doc?) or "You should feel assured it's nothing and just need to relax and do deep breathing exercises" (not verbatim quotes, but you know what I mean). I'm certainly glad I didn't trust *my* doctors. They almost had me convinced (though not quite) that I was insane! I seriously contemplated suicide. I started to question my interpretation of what was going on with my body: maybe it's "normal" to have pee running down my legs as I'm running to the bathroom (after all I'm 44 now!); maybe it's "normal" to feel like a rope is tied around my leg and the circulation is cut off; maybe I'm *making* myself feel off-balance in the doctor's office when I get on the scale (after all, I'm hyperaware of what they're thinking about me, since I'm sure the doc has clued the nurse in who is weighing me on what a nut-case I am, and maybe I'm unconsciously exaggerating the effect); maybe it's "normal" to choke on my food and have my speech become slurred and look nine months pregnant by bedtime and have nausea and stomach pain that is so severe that it doubles me over and keeps me up night after night.
After all, the doctors didn't seem to think much of what I was telling them and the multitude of tests done and all the neuro exams showed nothing (until recently, that is) other than that I was a psychosomatic, OCD-plagued patient who "continues to *insist* that she has a neurologic problem, *claims* that she had a past Horner's syndrome, "insists/claims" ad nauseum. When I read my records before going up to Mayo I was so outraged (and still am) that I have already typed up a five-page letter that I am sending to the last neuro I saw (as soon as I get a definitive dx) to answer every one of his assertions/BS in his dictation.
Don't ever give up, Patsy. I can tell you are frustrated. Eventually something will come to light. It did for me, though later than sooner. If I hadn't been dxd with the gastroparesis I would still be hearing the same **** from them. Although the neuro at Mayo knows I have auton. neuropathy, and I believe she is on the right path to diagnosing me, I absolutely believe that she would have dismissed me as well (as good of a doctor as I think she is) if I hadn't just been dxd with the severe gastroparesis prior to heading up to Mayo to see her. She didn't intend to do any testing on me (just a consult). My point is, sometimes that is what it comes down to-unfortunately. Doctors don't believe in what they can't see (I like to think of it as an "illness" they have), and when something is finally revealed in your case via testing or neuro exam, then it will lead to further testing and eventually you will be dxd. I hope you get answers soon.
By the way, getting a diagnosis (or being deemed credible) doesn't lessen the anger any (at least it didn't in my case). I haven't even seen my PCP (actually a very good diagnostician, I might add) since I got back from Mayo and it is going to be interesting to see what he has to say when I see him (my last appointment he was still insisting it was psychosomatic-though in not so many words; they are very cautious, you know). I felt like taking his stethoscope and wrapping it around his neck, and I left his office and drove home feeling desperate once again.
After all, the doctors didn't seem to think much of what I was telling them and the multitude of tests done and all the neuro exams showed nothing (until recently, that is) other than that I was a psychosomatic, OCD-plagued patient who "continues to *insist* that she has a neurologic problem, *claims* that she had a past Horner's syndrome, "insists/claims" ad nauseum. When I read my records before going up to Mayo I was so outraged (and still am) that I have already typed up a five-page letter that I am sending to the last neuro I saw (as soon as I get a definitive dx) to answer every one of his assertions/BS in his dictation.
Don't ever give up, Patsy. I can tell you are frustrated. Eventually something will come to light. It did for me, though later than sooner. If I hadn't been dxd with the gastroparesis I would still be hearing the same **** from them. Although the neuro at Mayo knows I have auton. neuropathy, and I believe she is on the right path to diagnosing me, I absolutely believe that she would have dismissed me as well (as good of a doctor as I think she is) if I hadn't just been dxd with the severe gastroparesis prior to heading up to Mayo to see her. She didn't intend to do any testing on me (just a consult). My point is, sometimes that is what it comes down to-unfortunately. Doctors don't believe in what they can't see (I like to think of it as an "illness" they have), and when something is finally revealed in your case via testing or neuro exam, then it will lead to further testing and eventually you will be dxd. I hope you get answers soon.
By the way, getting a diagnosis (or being deemed credible) doesn't lessen the anger any (at least it didn't in my case). I haven't even seen my PCP (actually a very good diagnostician, I might add) since I got back from Mayo and it is going to be interesting to see what he has to say when I see him (my last appointment he was still insisting it was psychosomatic-though in not so many words; they are very cautious, you know). I felt like taking his stethoscope and wrapping it around his neck, and I left his office and drove home feeling desperate once again.
Someone posted that a "negative work-up" will give you piece of mind. No it won't. At least, not for me it didn't. I have all the same symptoms you have and many more for almost 2 years now. Complete neuro work-up (saw 4 neuro's) negative. I don't feel one bit better about it. In fact, even worse because I don't know what it is.....
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
The symptoms that you describe are non-specific, and can be seen in a number of different problems. Given your story of multiple complaints in multiple different areas of the nervous system (without evidence of problems despite fairly extensive testing), my first thought is depression. Depression results in the amplification of minor pains and can even produce pain (that feels just like real pain) that would not otherwise be there. Depression also causes insomnia and fatigue. Some anti-depressants are better for pain than others (at least in clinical experience-no good trials) such as wellbutrin, effexor and possibly cymbalta. I would suggest that you discuss these options with a psychiatrist. That being said, I would recommend continuing to search for other causes as you start a trial on wellbutrin, etc. Many of the symptoms that you describe are found in patients with multiple sclerosis, but from all the symptoms that you describe I doubt that one questionable spot on your MRI could explain everything. I did not hear about a MRI of the cervical spine (I would suggest one with contrast if you have not had one), and/or a lumbar puncture (to look for inflammation, IgG index, Tourtelotte panel, oligoclonal bands, NMO antibody). I would also recommend an EMG given your history of weakness, numbness/tingling in your calves and fasiculations. An SSEP (somatosensory evoked potential) would be able to assess the role that the curvature of your spine may be playing.
I hope this has been helpful.
The symptoms that you describe are non-specific, and can be seen in a number of different problems. Given your story of multiple complaints in multiple different areas of the nervous system (without evidence of problems despite fairly extensive testing), my first thought is depression. Depression results in the amplification of minor pains and can even produce pain (that feels just like real pain) that would not otherwise be there. Depression also causes insomnia and fatigue. Some anti-depressants are better for pain than others (at least in clinical experience-no good trials) such as wellbutrin, effexor and possibly cymbalta. I would suggest that you discuss these options with a psychiatrist. That being said, I would recommend continuing to search for other causes as you start a trial on wellbutrin, etc. Many of the symptoms that you describe are found in patients with multiple sclerosis, but from all the symptoms that you describe I doubt that one questionable spot on your MRI could explain everything. I did not hear about a MRI of the cervical spine (I would suggest one with contrast if you have not had one), and/or a lumbar puncture (to look for inflammation, IgG index, Tourtelotte panel, oligoclonal bands, NMO antibody). I would also recommend an EMG given your history of weakness, numbness/tingling in your calves and fasiculations. An SSEP (somatosensory evoked potential) would be able to assess the role that the curvature of your spine may be playing.
I hope this has been helpful.
My maternal aunt had an MRI last week and they found 2 periventricular lesions and some other various focal intensities in white matter? She has bladder probs, pain/weakness in the legs, speech problems (can't think of or form words), headaches, fatigue, swallowing probs. She also has thyroid problems that they could not treat because her bloodwork is always strange (leukonpenia?). Anyway, hoping the doctor can get to my question next:)
You are reading content posted in the Neurology Forum
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
