Aa
Trying to prepare for new neuro
Ok. This is long.
Basic history is that this started over 5 yrs ago with sudden onset dizzyness and trouble walking. Had MRI - only one lesion on it and was told nothing was wrong with me - diagnosed with conversion syndrome. I requested a referal to a phsycologist which he said wouldn't do any good, so I didn't get it. Went on my way and the problem slowly resolved and then they suddenly returned several times over the next few years. This year had a bunch of additional issues crop up - numbness and tingling and burning, muscle twitichies, etc.
Neuro Exam April 25/08: Visual fields and extraocular movements were mornal. No internucular opthalmoplegia. Pupillary responses and optic disks were normal. Trigeminal sensation was normal for touch, pinprick and vibration. No facial weakness. Tongue and palate movements were normal. There was no lateralized hearling loss. Forward flexation of her neck didn't produce Lhermitte's sign. There was no pronator drift or sensory neglect. Tone was normal in the arms and legs, but she had a couple of beats of clonus at the ankles. She had an equivocal babinski response in the left foot and a downgoing response in the right foot. She had some giveaway weakness in the left leg, but no clear neurologic weakness. She swayed on Romberg's testing and when preforming tandem gait. Toe tapping was reasonably well performed bilaterally. She could walk on her heels and toes. Finger to nose testing was normal.
MRI in aug 10th. It was Sagittal and axial proton density weighted fast spin echo and axial T2 weighted fast spin echo sequences. No contrast
Findings: There is a scattering of tiny white matter hyperintensities on T2 weighting in the left frontal lobe. One is periventricular at the left frontal horn, a few are juxtacortical; however they are all of quite small size and the only other white matter hyperintensity is in deep white matter of the right frontal lobe. No infractentorial signal abnormality is seen. Cerebellar tonsils reach the level of the lower margin of the foramen magnum without obvious compression. Ventricles are normal size.
Impression: White matter findings do not really satisfactorily meet international panel for brain appearance of MS. If clinical suspicion of MS remains elevated, then a followup mri of the brian is recommended in one years time.
All evoked potentials were negative.
Second neuro exam Nov 28: **** was seen again for possible trigeminal neuralgia and other symptoms. She did find the carbamazepine helful for the left facial neuralgia.She continues to take gabapentin 600mg tid which helps control tingling sensations that move through her left face arm and body. At night she is taking imipramine 50 mg and is sleeping not too badly. She is having other symptoms including charley horse type cramping in her hands and feet. Robaxacet does not give her significant relief. This happens one or two days per week. She has also noticed fasciculatations and twitching in her muscles at times but it is not painful. She had an episode of tingling and burning sensations in her right leg. Sometimes she could feel it right from under her right breast all the way down to her foot. Through September and October she has been having some buckling of her left knee. Walking distances she trips over her left foot. On a cruise she had to use a wheelchair as she was swaying and dizay too much to safely navigate with a cane. She finds her left leg gets heavy when walking distance. She has had some stress incontinence and a couple of episodes of urgency incontinence in the summer. She has not had any significant incontinence lately. she takes Axert two or three times per month for migraines. She uses tramadol one or two days to control generalized body pain. About one a week she will take 1/4 to 1/2 a tablet of percocet. She usually does this if she is going out to a social engagement to control her pain more effectively. She describes constant buzzing like a bee in her feet.
The MRI scan of her head was nonspecific. We had a look at it today and there were just a couple of tiny high signal lesions subcortically which were nonspecific.
On Examination: She walked with a limp on the left leg. By hanging onto the wall she was able to walk on her heels. Toe tapping was slightly slowed on the left compared to the right. Reflexes were symmetric and not hyperactive. There were no babinski signs. She said pinprick was less sharp on the left foot compared to the right. She could feel vibration symetrically in the toes. Finger/nose testing was normal. No intranucular ophthalmoplegia. Visual fields were full. There was no nystagmus. Pupils were normal.
Assessment: She continues to suffer with probable left trigeminal neuralgia and multiple nonspecific symptoms. The main differntial diagnosis for her chronic pain and paresthesias would be fibromyalgia.
Lumbar puncture Dec 15: RBC CSF <1; WBC CSF <1; Glucose CSF 3.1; Protein CSF 0.33 g/l; Immunoglobin G 9.6; Albumin 44 g/l; protein CSF 426 mg/l
Ok. So. Now the thing is that I get that with these tests all being negative I should be out of the woods for ms - which big whew. I'm still really confused as to where to go now though. I've got a new neurolgist appointment on the 26th. My old neuro seemed to just want to rule out MS - and now that it is done, he is done. I'm continuing to have more and more walking issues - it seems like every time I go through a 'flare' I keep a bit more of the issues. I use a cane a lot now for walking. I have such bad spasm in my calves tonight - they'll be fine for months and then get sore and rock hard for days and no amount of stretching gets them to let go. Tonight it's also in the back of my one upper leg which hasn't happened before and it's really affecting my walking because my right leg keeps buckling. So...great...but what do I do? How do I keep this from getting worse? I asked my regular doctor for a referal to a psycologist and he told me he didn't believe it was conversion disorder so to just keep at the neuro - that's when he switched me. My old neuro has the bed manner of a dry peice of toast. Actually that's maligning the toast.
I don't know what to do. I mean, I've accepted the fibro and manage it as well as I can through diet stretching etc. Migraines ditto plus meds. But the slow drift into less ability to walk...I don't know what to do with that. And the parathesias - big time ouch at times. So much that I'm crying. I go through long stints where the drugs control it just fine and then it flares up and it doesn't do the job. The trigeminal neuraligia - well we know how much fun that is, but I know that I have options for surgery etc there.
So I guess I'm wondering what could this be. If I shouldn't post this here, cool, it's just been that this has been so 'msish' and I was wondering if maybe it was a mimic. I've been tested for ANA and lyme and all that 4 yrs ago and it was negative. I just want something I can do, you know? I'm already talking to a therapist but she seems to feel I'm doing everything ok too. I just want to keep at least what I have now, if not improve. I don't want to keep getting worse. If you have anything to offer, that'd be great.
Thanks so much!
Basic history is that this started over 5 yrs ago with sudden onset dizzyness and trouble walking. Had MRI - only one lesion on it and was told nothing was wrong with me - diagnosed with conversion syndrome. I requested a referal to a phsycologist which he said wouldn't do any good, so I didn't get it. Went on my way and the problem slowly resolved and then they suddenly returned several times over the next few years. This year had a bunch of additional issues crop up - numbness and tingling and burning, muscle twitichies, etc.
Neuro Exam April 25/08: Visual fields and extraocular movements were mornal. No internucular opthalmoplegia. Pupillary responses and optic disks were normal. Trigeminal sensation was normal for touch, pinprick and vibration. No facial weakness. Tongue and palate movements were normal. There was no lateralized hearling loss. Forward flexation of her neck didn't produce Lhermitte's sign. There was no pronator drift or sensory neglect. Tone was normal in the arms and legs, but she had a couple of beats of clonus at the ankles. She had an equivocal babinski response in the left foot and a downgoing response in the right foot. She had some giveaway weakness in the left leg, but no clear neurologic weakness. She swayed on Romberg's testing and when preforming tandem gait. Toe tapping was reasonably well performed bilaterally. She could walk on her heels and toes. Finger to nose testing was normal.
MRI in aug 10th. It was Sagittal and axial proton density weighted fast spin echo and axial T2 weighted fast spin echo sequences. No contrast
Findings: There is a scattering of tiny white matter hyperintensities on T2 weighting in the left frontal lobe. One is periventricular at the left frontal horn, a few are juxtacortical; however they are all of quite small size and the only other white matter hyperintensity is in deep white matter of the right frontal lobe. No infractentorial signal abnormality is seen. Cerebellar tonsils reach the level of the lower margin of the foramen magnum without obvious compression. Ventricles are normal size.
Impression: White matter findings do not really satisfactorily meet international panel for brain appearance of MS. If clinical suspicion of MS remains elevated, then a followup mri of the brian is recommended in one years time.
All evoked potentials were negative.
Second neuro exam Nov 28: **** was seen again for possible trigeminal neuralgia and other symptoms. She did find the carbamazepine helful for the left facial neuralgia.She continues to take gabapentin 600mg tid which helps control tingling sensations that move through her left face arm and body. At night she is taking imipramine 50 mg and is sleeping not too badly. She is having other symptoms including charley horse type cramping in her hands and feet. Robaxacet does not give her significant relief. This happens one or two days per week. She has also noticed fasciculatations and twitching in her muscles at times but it is not painful. She had an episode of tingling and burning sensations in her right leg. Sometimes she could feel it right from under her right breast all the way down to her foot. Through September and October she has been having some buckling of her left knee. Walking distances she trips over her left foot. On a cruise she had to use a wheelchair as she was swaying and dizay too much to safely navigate with a cane. She finds her left leg gets heavy when walking distance. She has had some stress incontinence and a couple of episodes of urgency incontinence in the summer. She has not had any significant incontinence lately. she takes Axert two or three times per month for migraines. She uses tramadol one or two days to control generalized body pain. About one a week she will take 1/4 to 1/2 a tablet of percocet. She usually does this if she is going out to a social engagement to control her pain more effectively. She describes constant buzzing like a bee in her feet.
The MRI scan of her head was nonspecific. We had a look at it today and there were just a couple of tiny high signal lesions subcortically which were nonspecific.
On Examination: She walked with a limp on the left leg. By hanging onto the wall she was able to walk on her heels. Toe tapping was slightly slowed on the left compared to the right. Reflexes were symmetric and not hyperactive. There were no babinski signs. She said pinprick was less sharp on the left foot compared to the right. She could feel vibration symetrically in the toes. Finger/nose testing was normal. No intranucular ophthalmoplegia. Visual fields were full. There was no nystagmus. Pupils were normal.
Assessment: She continues to suffer with probable left trigeminal neuralgia and multiple nonspecific symptoms. The main differntial diagnosis for her chronic pain and paresthesias would be fibromyalgia.
Lumbar puncture Dec 15: RBC CSF <1; WBC CSF <1; Glucose CSF 3.1; Protein CSF 0.33 g/l; Immunoglobin G 9.6; Albumin 44 g/l; protein CSF 426 mg/l
Ok. So. Now the thing is that I get that with these tests all being negative I should be out of the woods for ms - which big whew. I'm still really confused as to where to go now though. I've got a new neurolgist appointment on the 26th. My old neuro seemed to just want to rule out MS - and now that it is done, he is done. I'm continuing to have more and more walking issues - it seems like every time I go through a 'flare' I keep a bit more of the issues. I use a cane a lot now for walking. I have such bad spasm in my calves tonight - they'll be fine for months and then get sore and rock hard for days and no amount of stretching gets them to let go. Tonight it's also in the back of my one upper leg which hasn't happened before and it's really affecting my walking because my right leg keeps buckling. So...great...but what do I do? How do I keep this from getting worse? I asked my regular doctor for a referal to a psycologist and he told me he didn't believe it was conversion disorder so to just keep at the neuro - that's when he switched me. My old neuro has the bed manner of a dry peice of toast. Actually that's maligning the toast.
I don't know what to do. I mean, I've accepted the fibro and manage it as well as I can through diet stretching etc. Migraines ditto plus meds. But the slow drift into less ability to walk...I don't know what to do with that. And the parathesias - big time ouch at times. So much that I'm crying. I go through long stints where the drugs control it just fine and then it flares up and it doesn't do the job. The trigeminal neuraligia - well we know how much fun that is, but I know that I have options for surgery etc there.
So I guess I'm wondering what could this be. If I shouldn't post this here, cool, it's just been that this has been so 'msish' and I was wondering if maybe it was a mimic. I've been tested for ANA and lyme and all that 4 yrs ago and it was negative. I just want something I can do, you know? I'm already talking to a therapist but she seems to feel I'm doing everything ok too. I just want to keep at least what I have now, if not improve. I don't want to keep getting worse. If you have anything to offer, that'd be great.
Thanks so much!
LOL, Thanks for the responses. And nah, I'm easy going. I've been posting little bits here so I'm familiar with the situation.
No spinal MRI yet. I'm curious to see how my relationship will be with my new neuro. I didn't DARE suggest or ask a fricken thing to the old one. He'd blow a gasket. So I just tried to provide him with as much info and asked leading questions. He wasn't overly helpful and was very challenged by any patient that was self-educating. His word was GOD and you better believe it baby. He even distained what my GP's had told me as 'them not knowing what they were talking about'.
IF I can get a decent relationship with my new neuro I'm gonna ask him for another MRI in the future of brain and spine with contrast. He's supposed to be a really awesome kind guy. :)
My old neuro didn't even look at my mri until I was in office and then scrolled through until he found the little arrowed spots that the radiologist pointed out. 3 minutes TOPS looking at it while he explained how it didn't look like MS.
Now...in the end here I'm really not overly chasing that diagnosis. I'm open minded. I want them to look further into things like mycoplasma, ricosetta etc...I've tested neg for lyme but our test is just the elisa which I understand ***** butt.
As well I'm perfectly willing to go seek a psche evaluation...I've seen therapists over the years to deal with various things, have a looong history of depression but have learned how to manage things pretty well now. I have continued with the therapy because this is a lot to carry on my plate and I want to make sure that my mental health is at it's best. Our body is an entire big picture - you have to look after all the bits of it. LOL
I've changed my diet, take several vitamin and mineral supplements, see a naturopath, do stretching every day - gentle exercise when I can manage. I'm very blessed to have a job I can do from home, or I would have lost any other 'regular' job. Still...even with that...sometimes I wonder if I can manage. I'm good for, on average, 2-3 hours of moderate activity a day. Push beyond that and I'm suffering more the next day. I end up dragging my left leg behind me like a dead thing and I'm simply exausted.
Ah well. Onwards goes the journey. When I stared this I was freaked and wanted answers yesterday! Now I realize we're gonna have to plunk along for a while. I just don't want to lose anymore of my mobility as I'm sure everyone can relate to. Even at this status I wonder about pursuing a bit of help as far as disability - but my doctor is very against that just because he doesn't want me to put myself into that catagory as he worries that I'll 'give up' and he wants me to be as happy and healthy as I can be. He's a fantastic doctor and I really love him...but he's not in this body either. LOL
Thanks so much for your time. I know that was a lot to wade through.
No spinal MRI yet. I'm curious to see how my relationship will be with my new neuro. I didn't DARE suggest or ask a fricken thing to the old one. He'd blow a gasket. So I just tried to provide him with as much info and asked leading questions. He wasn't overly helpful and was very challenged by any patient that was self-educating. His word was GOD and you better believe it baby. He even distained what my GP's had told me as 'them not knowing what they were talking about'.
IF I can get a decent relationship with my new neuro I'm gonna ask him for another MRI in the future of brain and spine with contrast. He's supposed to be a really awesome kind guy. :)
My old neuro didn't even look at my mri until I was in office and then scrolled through until he found the little arrowed spots that the radiologist pointed out. 3 minutes TOPS looking at it while he explained how it didn't look like MS.
Now...in the end here I'm really not overly chasing that diagnosis. I'm open minded. I want them to look further into things like mycoplasma, ricosetta etc...I've tested neg for lyme but our test is just the elisa which I understand ***** butt.
As well I'm perfectly willing to go seek a psche evaluation...I've seen therapists over the years to deal with various things, have a looong history of depression but have learned how to manage things pretty well now. I have continued with the therapy because this is a lot to carry on my plate and I want to make sure that my mental health is at it's best. Our body is an entire big picture - you have to look after all the bits of it. LOL
I've changed my diet, take several vitamin and mineral supplements, see a naturopath, do stretching every day - gentle exercise when I can manage. I'm very blessed to have a job I can do from home, or I would have lost any other 'regular' job. Still...even with that...sometimes I wonder if I can manage. I'm good for, on average, 2-3 hours of moderate activity a day. Push beyond that and I'm suffering more the next day. I end up dragging my left leg behind me like a dead thing and I'm simply exausted.
Ah well. Onwards goes the journey. When I stared this I was freaked and wanted answers yesterday! Now I realize we're gonna have to plunk along for a while. I just don't want to lose anymore of my mobility as I'm sure everyone can relate to. Even at this status I wonder about pursuing a bit of help as far as disability - but my doctor is very against that just because he doesn't want me to put myself into that catagory as he worries that I'll 'give up' and he wants me to be as happy and healthy as I can be. He's a fantastic doctor and I really love him...but he's not in this body either. LOL
Thanks so much for your time. I know that was a lot to wade through.
Oh, I just have to say that I SO don't like how the "radiologist" decided to "suggest" when you should get a repeat MRI!!!!!! That is up to your Dr.
AND, this doesn't sound like a fibro workup to me!
AND,....ok, I'm sorry....LOL I don't want to give you the wrong impression of me when you just joined. I'm not hollaring at you or anything. I think our members will have a lot to say about what you have going on so far
Have you had a spinal MRI?
-Shelly
AND, this doesn't sound like a fibro workup to me!
AND,....ok, I'm sorry....LOL I don't want to give you the wrong impression of me when you just joined. I'm not hollaring at you or anything. I think our members will have a lot to say about what you have going on so far
Have you had a spinal MRI?
-Shelly
A big hello and welcome to you!
And, to you to Josie!
Did the Dr. say your increase in lesion load is from fibro?
I've got more to say, but want to read this again, say hello quickly, and will get back w/you...
Thanks for joining us! I'm Shelly, a co-community leader here and I'm sure many will have things to weigh in here. I look forward to getting to know you both better.
ttys,
-Shelly
And, to you to Josie!
Did the Dr. say your increase in lesion load is from fibro?
I've got more to say, but want to read this again, say hello quickly, and will get back w/you...
Thanks for joining us! I'm Shelly, a co-community leader here and I'm sure many will have things to weigh in here. I look forward to getting to know you both better.
ttys,
-Shelly
I can certainly understand how frustrated you are! I'm in a very similar situation as you. I've been having many problems for at least 6 years, although I can look back over the decades (I'm 53) and see episodes I've had, but never reported to the doctor. I was always one who rarely went to the doctor.
I was diagnosed with Hashimoto's Thyroiditis 20 years ago and Fibro about 10 years ago. I've had MRIs that showed 2 non enhanced lesions, one on the corpus callosum and another "punctate foci" in the right parietal region. My symptoms just continue to worsen and now is affecting my walking, although not all the time. Also, the weakness in my arms is incredible and I have tremors almost all the time. The tingling, numbness, dizziness, etc....I could go on, but don't really want to.
My point is that I TOTALLY understand how you feel! I may not have MS, but what the heck DO I have? I wish I had an answer for you. Limbo land is a terrible place to be.Like you, I don't want MS or any other disease. I've been trying to improve my diet and have been taking all kinds of supplements: fish oil, C, D, B complex, magnesium, calcium, and a multi. I just want to feel better!!!
I, too, have been seeing a therapist and a psychiatrist because of suggestions that I may be depressed and have anxiety. But guess what, both the doc and my counselor think my mental health has greatly improved, but the physical sx just keep worsening.
So...I lurk on this board and others trying to figure out what I should do or where I should go to get help. At least I see there are other folks out there like me, and like you. That is somewhat comforting because I'd probably really think I was nuts if I couldn't read about others and their struggles!
I'm sending (((((((((BIG HUGS)))))))))) your way. I know you feel terrible but you are NOT ALONE!
Josie
I was diagnosed with Hashimoto's Thyroiditis 20 years ago and Fibro about 10 years ago. I've had MRIs that showed 2 non enhanced lesions, one on the corpus callosum and another "punctate foci" in the right parietal region. My symptoms just continue to worsen and now is affecting my walking, although not all the time. Also, the weakness in my arms is incredible and I have tremors almost all the time. The tingling, numbness, dizziness, etc....I could go on, but don't really want to.
My point is that I TOTALLY understand how you feel! I may not have MS, but what the heck DO I have? I wish I had an answer for you. Limbo land is a terrible place to be.Like you, I don't want MS or any other disease. I've been trying to improve my diet and have been taking all kinds of supplements: fish oil, C, D, B complex, magnesium, calcium, and a multi. I just want to feel better!!!
I, too, have been seeing a therapist and a psychiatrist because of suggestions that I may be depressed and have anxiety. But guess what, both the doc and my counselor think my mental health has greatly improved, but the physical sx just keep worsening.
So...I lurk on this board and others trying to figure out what I should do or where I should go to get help. At least I see there are other folks out there like me, and like you. That is somewhat comforting because I'd probably really think I was nuts if I couldn't read about others and their struggles!
I'm sending (((((((((BIG HUGS)))))))))) your way. I know you feel terrible but you are NOT ALONE!
Josie
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
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
