Unknown Neurological/Autoimmune disease

[Gbnqueen]

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???

11/5/11
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.
Impression:
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.....

[Melswanson502]

I just wanted to address the constipation.  I too have it.  Tell him to start taking mineral oil daily.  I've tried EVERYTHING, but nothing but mineral oil worked.  It basically lubricates the intestines so it will be able to slide out.  He'll have to experiment with how much he needs.  I take a full dosage cup daily. Mineral oil has absolutely no taste.  It's thick like oil, so if he can get past that, it's not bad.  Having had many bowel impactions in the past, I'd swallow feces flavored oil if I had to, lol.  It's the worst pain ever. I'd pass out and even woke up in a pool of blood one time.  If he does ever get impacted, and he'll definitely know, tell him to take a double dose of mineral oil, take something that will make him fall asleep, such as Benedryl, and he'll wake up and have no trouble going.  Or he can just try to lay down, but it can take 1-4 hours to work.  Of course run this by his physician first.

[mysteryofmedicine]

Has he been to Mayo in Rochester?

[Gbnqueen]

Close monitoring. Yes he has been told that many times but he has too many labs that say otherwise. He will be seeing someone soon though as this is taking it toll. We are also going to try East West Medicine / Acupuncture this month.

[Gbnqueen]

Close monitoring.

[Gbnqueen]

We have had many of the tests were done at once. Some were clustered etc. Not just nitpicking. As I previously stated I am in the Healthcare field and try to stay out of the hospital. No one has deemed it necessary to hospitalized him as he is stable otherwise such as vital signs. Hospitalizations are not always the sure fire way to get things done. Often times you are just sitting there waiting like we can do at home except for most people in the hospital need more  

[Gbnqueen]

It is now 4.5 yrs later. Still no diagnosis. Spouse has Hashimoto's Thyroiditis dx 2012 or 13, iritis is chronic and autoimmune, WBC's have been elevated since 2007 mostly ranging from 11000-12000 but last one was 15,000. Diabetes is hard to control with other health issues. He is very slow to get around and can not tolerate heat or too much exertion. Lupus antibodies were elevated but not all of them. Lupus expert at UCLA unable to give diagnosis of Lupus. Could be from the Hashimoto's she said. Has headaches frequently and just increased Nortryptiline again. He does take Plaquenil and still sees rheumatologist at UCLA. The Plaquenil does help dampen the symptoms and we know because the pharmacy screwed up once and he ran out. The med has to build up over a week and he was out for over a week. Tremors and other symptoms worsened. He is officially retired and disabled. Was off many of the meds that he was on when I first posted but has recently readied a few such as baclofen, Lyrica, clonazepam. Still at a loss. Just at the mercy of medicine and fate. Lyme disease was negative many times by multiple different medical facilities.

[navydad721]

Have they said its a PSYCH problem,, many many times I was told that, is he in the hospitalbeing checked for the above list,,with the advancing nature of what he seems to be going though,, seems to me that he needs to be in a setting where they can get all these test run instead of nit picking and saying it might be this,, or it might be that,,the medical community can be downright dangerous to us,, we complain,, and they just dont listen at times,,

[Caryopteris]

You don't say how old your husband is, but all the back problems just sound like degenerative problems of aging.  I don't think they have anything to do with his cognitive impairment.  As far as the change in curvature, that is a symptom of pain, and you should not focus on that finding.  I think the LP finding of bands might be key.  Assuming by bands they mean oligoclonal bands, I found this list on wikipedia of causes of oligoclonal bands on LP:  

Oligoclonal bands are also found in:
Multiple sclerosis
Lyme Disease
Devic's disease
Systemic lupus erythematosus
Neurosarcoidosis
Subacute sclerosing panencephalitis
Subarachnoid haemorrhage
Syphilis
Primary central nervous system lymphoma
Sjögren's Syndrome
Guillain-Barre Syndrome

So maybe he needs to be checked for things on this list.