My husband started having intermittent tremors in nov 2010. In Dec one week before Christmas he started having constant tremors. The next week muscle twitching started with the tremors. We started seeing a Neurologist in Jan 2011, by this time he was having fatigue, weakness, and pain which have continued to progress. In Feb he had a LP which had 2 O bands. He also had some facial numbness and right sided limb numbness. Neuro MD gave IV Solumedrol 1g daily for three days then tapered off with prednisone. That made a huge improvement, tremors went away. Since the muscle weakness, fatigue, and pain have continued to worsen. All MRI's have been negative, slightly abnormal EMG, no optic neuritis but have had iritis since 8/2009. Cognitive issues have been a problem also. No one has any idea what is going on. They have ruled out movement disorders and last neuro told him to see a psychologist. We don't know what to do next. Any ideas would be helpful. This is not a psychological problem. Help???
This sounds exactly like Lime disease! Google Lime disease and you will find all of those symptoms. Lime disease is from a tic bite. Most people don't even remember being bit by the tick. Some of the ticks are as small as a flake of pepper so it can be hard to notice. Have you already looked into this posibility? If it is lime he can get better with IV antibiotic and get his life back. Hope this helps and I'm so very sorry for you and your husband. I know what it's like to be sick for a long time and have no answers.
How old is your husband? Did the steroids relieve his muscle weakness, fatigue and pain temporarily or only the tremors? Since the steroids relieved the tremors, he is suffering from inflammation somewhere in the brain....possibly Lyme's disease (like the above person mentioned), food intolerances, food allergies, other infections, etc. Doctors don't know everything - that would be impossible. What kind of bloodwork has he had done? Where is his pain?
My husband just turned 40 this year. RA, Spondylitis, lyme disease, lupus, heavy metal poisoning have all been ruled out. His ebv antibodies were elevated meaning that he has had EBV in the past but never dx with it. They have ruled out movement disorders. Vitamin levels were all ok except vit d which has since been corrected. Thyroid levels were ok. I know doctors dont know everything, I think we are still in very early stages of completely understanding the human body especially neurologically. He has had neuropsych testing which shows mild cognitive abnormalities. He has difficulty with auditory processing among other things. No allergies at all. He has pain mostly in his lower back and r hip. R hip xray was negative. MRI of brain, cervical, and thoracic negative. He had a slightly elevated GAD level which is now normal. After the Solumedrol tx it helped with most symptoms but tremors were the only thing that disappeared for about 2-3 months and now progressively getting worse, more prominent with exertion.
Forgot. He has the HLA-b27 gene associated with iritis. No one but the eye doc seems to think this is related. We think that it is. We are very discouraged and frustrated. Been sent to other neuro specialists as well for MS and movement disorders. His brother has MS. We know that it doesnt mean that he has MS. His symptoms fit so many neuro illnesses. Just dont know if we are missing anything!
The Lyme test can come back negative several times before it shows a posative. I had EBV and was very ill for five years but nothing like your husband. Since the steroids helped it is defintaely some type of inflimmation shows signs of autoimmune as I'm sure you know. I am so sorry that you and husband are going through this. I pray that you find an answer. I also want to tell you that I think you are wonderful for getting on her researching and trying to find answers. I would have done anything to have had someone fight like that for me when I was so sick and had no strength to fight for myself.
I just thought of something, I heard of someone having similar symptoms after being exposed to roach bombing. They went in the house to early and it completely messed them up and took a long time to find out what was wrong. Just a thought. Any past or current mold exposure?
Since 70% of our immune system lies in our intestines, maybe go out on a limb and try an Atkins type diet or Paleo diet adding gluten and cow's milk free to the mix. I don't know if he'd be interested in such a diet, but some people get help with autoimmune problems that way. Bringing the body back to optimal health can't hurt. Of course, check with a doctor before starting such diets.
Does he have any problems with dizziness or headaches? Any intestinal issues, discomforts? Is he overweight? Asthma? Pressure in the head anywhere? Ear ringing, hearing loss?
I just hope someone is able to help you. Hang in there.
I believe he was tested twice for lyme disease. We have looked up the s/s and don't believe that is the problem. Plus neurologist does think that is the issue. Has not been exposed to any type of pesticides in recent years. Mold is always a possibility but then again no respiratory problems. There has been 8 going on 9 months since this all started and so much has been done or researched it is hard to get it all out in one message.
No stomach issues except constipation from meds. No headaches. Dizziness with certain meds. He has started having nausea and burning sensation in abdomen when bending his neck chin to chest. No pressure in the head. No respiratory problems. No changes in the ears. He is overweight but has been losing weight due to eating right and meds that have side affect of decreased appetite. Also forgot to add he does have a condition called anhydrosis, not actually diagnosed by MD but he is aware and states that is a neurological condition which also has other causes. We will discuss this with neurologist Monday. As for autoimmune, we believe it is both autoimmune and neuro.
The anhydrosis is that he doesnt really sweat. He has been this way since his early 20's if not earlier. Mom and dad says he would sweat when he was a boy so not sure when this started. He has had high blood presure since his 20's but just recently had cardiac workup and heart is in great condition. He takes his BP meds and his cholesterol meds.
Thyroid levels are normal. Tested multiple times and will be retesting them soon. I am in medical field and this is why I am at a loss. I have requested every test I can think of that might be helpful. We have been very aggressive with tests, lab and otherwise. This is why we are so frustrated. Unfortunately I think it will be awhile before we get a diagnosis unless there is something we are missing.
Our current neurologist has currently given him a dx of single demyelinating event. The reason he was given IV Solumedrol was he thought he was having an acute exacerbation of his illness back in February. It obviously worked for a bit. Like I said though only tremors went away for a few months and other symptoms had some improvement for a short time. Continued to have weakness fatigue and pain.
I know he's had mri's etc. to look for lesions, etc. But do you know if the doctor is aware of chiari malformation, tethered cord - they say many doctors miss this on the scans because they never heard of it and don't look for it. I'm thinking of people that get relief with steroids or diet that reduces inflammation and the symptoms - but due to the physical deformity, can't get full relief with those measures. When you said he puts his chin to his chest and this causes digestive symptoms, I thought of possible genetic problems in that area - its as if he is pulling on something that triggers a reaction. A vague thought from someone who hasn't read enough on these disorders to completely know how it all works or doesn't work. But I thought I'd bring it up to see if the doctors could look into this if it was a possible problem for him.
And if all else fails, again, I recommend diet alterations to reduce autoimmune reactions, brain inflammation, etc. Gluten and milk are high on the autoimmune list of problem foods along with sugar and alcohol, etc.
New MRI's the other day with new abnormalities! Not sure what it all means for him, some of it, according to research I have done may explain some of his lower limb symptoms but does not explain other neuro symptoms such as tremors, cognitive problems. He has been stuttering a lot lately, having constipation and difficulty voiding (urinating). He is taking Dulcolax stool softener 200mg two times a day and still no help, had to actually give him laxatives the other day. Labs are a bit abnormal--elevated WBC's just over 12000, Neutrophils elevated slightly, Thyroperoxidase slightly elevated. Further testing for that is coming up. Something has to show up sooner or later.
Lumbar Spine w/o contrast
Findings: There is straightening of the lumbar lordotic curvature.
L4-L5 Mild degenerative circumferential disc bulge, bilateral facet and ligamentum flavum hypertrophy and minimal circumferential epidural lipomatosis. No significant central canal or neural foramina stenosis is identified.
L5-S1 Degenerative disc disiccation and posterior broad based disc bulge, with posterior annular fissure. There is circumferential epidural lipomatosis, resulting in narrowing of the thecal sac and effacement of the surrounding CSF spaces. No significant neural foramina stenosis is identified.
1. Degenerative disc desiccation and posterior broad based disc bulge, with posterior annular fissure are seen at L5-S1. In addition, there is circumferential epidural lipomatosis at L5-S1 resulting in narrowing of the L5-S1 thecal sac and effacement of the surrounding CSF spaces.
2. No significant neural foramina stenosis is seen throughout the lumbar spine
3. Small benign vertebral body hemangioma at T12 is seen.
MRI brain no problems,
MRI Cervical spine w, w/o contrast
Findings: There is reversal of the cervical lordotic curvature. The cervical vertebral body heights and disc spaces are well maintained. No acute bony fracture or dislocation is seen. Prevertebral soft tissue and paraspinal muscles are within normal limits. The cervical cord is normal in signal intensity and morphology. No intraspinal lesion or focal cord signal abnromality is seen. The visualized portion of the brainstem and cerebellum are unremarkable. No abnormal contrast enhancement is identified. No evidence of syringohydromyelia or syringobulbia.
Multilevel degenerative disease of the cervical spine is seen with mulilevel disc osteophyte complexes, bilateral facet and uncovertebral hypertrophy.
Incidental finding of central disc bulges at T1-T2 and T2-T3, without significant thoracic central canal stenosis or thoracic cord compression. No other abnormalities seen.
*** He has known for years that he has a 'military neck'. He found out at a chiropractor's office when he was sent there for neck pain. Nothing ever came of it as far as doctors being concerned. Now this reversal of cervical lordotic curvature? All this just raises more questions, I think this is a multi-system illness he has going on.....
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