Discussions By Condition: I cannot get a diagnosis.

man in 30s deteriorates to paralysis...

Posted In: I cannot get a diagnosis. 16 Replies
  • Posted By: helpingfriend1
  • January 14, 2009
  • 04:26 AM

I just don't know what to say about this situation because when I think about it, it frightens me to know that this could just happen to someone (and could have happened to me). My boyfriend's brother is now in his 30s. I have known him now for a little over 2 years. When I met him, he was walking with the assistance of one of those walkers that has wheels on it. He used to be able to lift one foot at a time to get to his destination. He is now totally wheelchair bound, cannot stand at all, sleeps in the wheelchair most nights, cannot relieve himself without assistance, cannot move his legs at all (not even wiggle his toes), and can only move one of his hands. He usually gets someone to place his hand in the general vicinity of where he wants it, and then is able to drag his hand across the table slowly to perform functions like push buttons on his cell phone, change channel with remove, push joystick for wheelchair. He is able to move his head from side to side. He is not able to move the trunk of his body. Family reports that his head has gotten bigger in size while all of this has happened. His stomach is huge now... no exercise, etc.

He has gone to the Mayo clinic, Johns Hopkins, DC doctors (he lives outside of Washington, DC) and a myriad of doctors who have ruled out MS, ALS, lyme disease, etc. Last I heard from his family, some doctor said something about a hole in his spinal cord. The young man used to travel to Brazil and other places in his 20s... I've wondered if some parasite was perhaps to blame...

Gave his family the idea that perhaps his medical history could get burned onto CDRom and then sent out to numerous doctors who are top rated in their respective fields... in the hopes that someone has heard of something similar. I want to help this guy... his family prays for him for a miracle... but they don't know what they are up against... no one does. His family has altered their lives to accomodate him (he had to move back home, house modified for wheelchair access, wheelchair access van purchased, etc), and has in general turned their lives upside down (my boyfriend included). Anyone have any suggestions, or have heard of anything like this in anyone else? Many thanks for listening.

Marlena

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16 Replies:

  • Don't think cell towers would be the problem... he lived one place when he started deteriorating, and a completely different city and state when he continued to deteriorate to almost complete paralysis. He now has to do those things that I described as a result of him being wheelchair bound. He used to travel extensively and internationally to vacation, and was quite active and hardly ever at home. Now, he has no choice. Don't think any of the things you described could account for hole in spinal cord...Marlena
    helpingfriend1 6 Replies
    • January 14, 2009
    • 03:29 PM
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  • Marlena, there is a great neurologist sometimes at this forum. His name is dr Cottle. I hope he sees your post. I am keeping my fingers crossed for you and your friend :)
    Felsen 510 Replies
    • January 14, 2009
    • 10:48 PM
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  • many thanks... hope he will see this also. MJ
    helpingfriend1 6 Replies
    • January 23, 2009
    • 08:31 PM
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  • He could be severely gluten intolerant! My dad died of als 3 years ago, i then was diagnosed with severe celiac disease. I believe my dad was too, his symptoms just happened to fit into "classic als". Gluten is the underlying factor in 77% of all auto-immune disorders. It just affects eveyones body differently! Among the 12893891723 other symptoms from gluten intolerance, depending on yourr body, periphial neropathy and other neurological disorders.. Hello! That can cause "paralysis". Gluten is the underlying factor in 77% of all auto-immune disorders and symptoms!!! Just bc a doctor (md) has medicine for a "disease", does not mean that they understand how the body works and why. They are scientists and "pharmocologists." unlike naturopaths (nd) who have a base in bio like md's, but then instead of learning "medicine" and "pharmacology" they are trained in how the body works, and why, personal healthcare, and herbolody/ancient medicine, etc.! Please keep your options open! And god bless you!
    Anonymous 42789 Replies
    • January 23, 2009
    • 09:50 PM
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  • Okay, I've read your posting and I want to initially ask you about the comment that he cannot relieve himself without assistance. I interpret that to mean that he is unable to utilize his hands in the normal performance of urination or is unable to stand without help to do the same. This is important because if he still has continence but merely needs mechanical assistance to perform urination, then we've got a better idea of the exent of involvement of the underlying cause. I would also like to know what his initial symptoms were prior to the need to use a walker. In addition, although I certainly would think it had been performed, I'd like to know the results of the spinal tap and just as importantly as the evaluation of the CSF or spinal fluid was the pressure demonstrated at the time. Realize that under certain conditions, pressure from spinal fluid can cause these symptoms to a lesser extent that are resolved through placement of a shunt although as I said, it's a condition quite well known among neurologists and other practitioners as well, so we simply need to know the results if possible. It can cause hydrocephalus to occur, but for a number of reasons the seemingly increase in this young man's head size would likely be from other causes. As for the hole in the spinal cord, this is likely due to either percolation of the cerebrospinal fluid into the cord or the presence of a syrinx, which is a sort of fluid-filled cavity within the spinal cord that develops. This is not the result of parasitic infestation, nor celiac sprue or other conditions being mentioned. Based upon your description, we have a developing spinal process that requires more information before I can offer you better direction. Again, we need to see some of the test results that were performed, particularly the spinal tap, ie pressure etc. and also any MRI results that may have been obtained. I'll look forward to hearing back from you and wish to merely qualify that you should firmly discuss with the person to whom all of these test data being mentioned belong such that they are fully aware and acknowledge that portions of medical record data would be published on an open forum. I'll be glad to review the case further, but please determine whether permission to post the requested information is granted. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • January 24, 2009
    • 00:00 AM
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  • These are his direct responses to your inquiry: Initial symptoms started in summer of 2005, he was having lower back pains.. he noticed it while playing basketball. It was hard for him to bend to pick up the ball... this went on for several months. 6 months after that, he had difficulty going up stairs...felt like ton of bricks on his back while going up. Felt weak in his legs. Going down was fine. Started seeing doctors after that... they had him taking steroids, and then EMG test was done, and they couldn't determine anything from those. One was done at Mayo clinic, one at Johns Hopkins. They were suspecting polymyocitis at that time. More tests were run at Mayo clinic, they thought lower motor neuron stuff like ALS. Couldn't determine if it was. Found that there was a pinhole leak at spinal cord at the bottom... pressure was fast going out. They did not treat it. Went to spinal doctor... he couldn't determine what was going on. Fluid was outside of the spinal membrane, and it was leaking out. Was tested for gillian's buret (sp?)lyme's diseasemytochondrial deficiencymuscular dystrophy all have been ruled out by doctors. Summer of 2005 began a lot of sweating and lower back pain... progressed 6 months later to difficulty climbing stairs... had large rash on his back that covered most of his back at that time. Had a biopsy on his leg to test muscle tissue in Feb 2006... he was walking with a single pole cane a month after that. Test results negative. Aug 2006 he had muscle biopsy on his arm at Mayo clinic... that's when she guessed lower motor neuron disease. By this time, he got a walker to help him walk faster down hallways. He was doing aquatic therapy at this time... doctors wanted him to do physical therapy, but he opted for aquatic since he heard it would be better for him. He fell around March of 2007 while using the walker, and it resulted in his legs getting stuck underneath of him until someone had to help him get up. As for his arms, he had difficulty lifting stuff about a year and half ago. Before that, he was able to lift himself up with his arm strength to transfer to chairs, etc. Now, he cannot do anything with his arms. He can barely use his fingers. He can move his shoulders... he cannot pick up anything. He does not have incontinence... he has full control over urine and bowel. He just requires assistance getting to bathroom to do it. It goes without saying that he has weight gain now... used to be 185... is now 256. His stomach is large, legs are swollen, ankles and feet sweeling (sometimes uses compression pumps on legs to ease swelling). He now sleeps in the wheelchair, and has the electric one that enables him to fully recline while in it. All of the above was just dictated to me by him via phone. He grants his permission for me to post the above, and for you to review his stats, etc. He has the MRI results on cd. He is going to look for the spinal tap info that was done. Should we post that here, or fax to your office, or something? He says he can burn his test stuff on cd and mail to you, if you like. By the way, I dont' think I said his age before... he is now 37 years old. Many thanks for your input... all help is appreciated. Marlena Jareaux
    helpingfriend1 6 Replies
    • January 24, 2009
    • 05:25 PM
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  • I'm wondering if his body is being poisoned? I recently found myself having a bunch of neurological tests, including blood and spinal fluid tests. In my case, they can't find out what's wrong with me, but my spinal fluid did test positive to fungus toxins. My fluid was sent to a specialized lab in Dallas, TX. The do not take insurance, although you can ask for paperwork so you can bill them yourself afterward. And, the tests are expensive, and should be used in conjunction with other tests run by your doctor. Anyway, the lab is http://www.realtimelab.com/. If he does have fungus toxins, a regimen of anti-fungal drugs, plus natural stuff to help the liver not get into overload, and fiber to help the body flush. If it does come down to fungus, I recommend finding a good naturopathic doctor to assist with detoxing the body. go to http://bastyr.edu/ to find a doctor in your area. Bastyr one of the best natural medicine universities in the United States. I hope this helps.
    lrakocy 1 Replies
    • January 25, 2009
    • 04:52 AM
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  • Okay, sorry for the delay. Please post an email address where I can forward you information regarding where to send the MRI and other test results. Please do not post any of the MRI or other imaging results on the forum due to the fact that identifying information cannot be redacted and it's important to protect anonymity and privacy as much as possible. I will be glad to review the test results and offer an opinion, but simply realize that it will be based strictly upon the information received and the history provided. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • January 26, 2009
    • 00:26 AM
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  • Be careful posting your email address on the forum...think there is a safer way to do it, but don't know how. You may want to look into this before posting. I know they checked for Lyme, but how many times and with what test? Testing is tricky and there are only a couple of labs that test accurately. I believe Lymenet is a good resource. Just think this should be further tested. Do you know his exact B12 levels? Could you find out and post here? Best wishesDOM
    acuann 3080 Replies
    • January 26, 2009
    • 02:16 AM
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  • There is absolutely no problem with posting an email address to this forum and if not the individual's primary email, a newly established address on any of the free email servers on the internet will suffice. Additionally, the person's symptoms on this posting have absolutely nothing to do with Lyme disease or B12 deficiency. You have no clinical skills whatsoever and your repertoire narrow beyond comparison. J Cottle, MD
    JCottleMD 580 Replies
    • January 26, 2009
    • 03:16 AM
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  • Hello I think it's best at this time to post one of my junk email accounts to use for these purposes. Dr. Cottle, I did call last week an office that I believed and hoped would be yours... left a message asking if you were the same one posting to this forum. That was me! You may send an email to me at mjareaux@hotmail.com with instructions as to how to send test results, etc to you. He is calling Mayo clinic today to get duplicate of his spinal results either emailed or faxed to him, which he will then forward. He said he intends to burn his files onto disk, and forward them to you. By the way, we went to a lyme doctor here in the area who has lyme disease herself... I think she would know what to test for, etc... Marlena
    helpingfriend1 6 Replies
    • January 26, 2009
    • 03:44 PM
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  • There is absolutely no problem with posting an email address to this forum and if not the individual's primary email, a newly established address on any of the free email servers on the internet will suffice. Additionally, the person's symptoms on this posting have absolutely nothing to do with Lyme disease or B12 deficiency. You have no clinical skills whatsoever and your repertoire narrow beyond comparison. J Cottle, MD Please stop insulting me. A person's email posted on this website is there for the entire world to see - I believe there is a better way to do this if you contact the administrator. That was my only point. Severe B12 deficiency could cause some of his symptoms, and should be ruled out. Not saying it is the direct cause. On further reading of the postings I agree that Lyme is not probable. DOM
    acuann 3080 Replies
    • January 26, 2009
    • 06:59 PM
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  • Hello I'm ok with posting my email address here.... it is a junk email account that I only use for such purposes...mostly junk there, so I'm cool. acuann, I do appreciate your comments. I will have him see in his results about B12... sure that it must have been checked, but you never know. We just want to get to the bottom of this, so that this man's life can be turned around in the opposite direction from where it seems to be heading now. He used to live such a full life filled with energy and life... though it has had the effect of having me count my blessings, as a friend of his, I just want to try to use some of my energy and willingness in the hopes that it can somehow benefit him. His family has helped him to settle into this new lifestyle, but since it entails such time for them and zaps the energy from all of them emotionally and physically... I thought the family could benefit from a fresh set of eyes and enthusiasm. I welcome your input, as well as that of Cottle and anyone one else has a plausible suggestion. Many thanks. Marlena
    helpingfriend1 6 Replies
    • January 26, 2009
    • 10:20 PM
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  • This thread seems pretty old but I have deteriorating control/ neurology problems and have been taking 5000% daily allowance of B12 and 500% B6. Maybe this is to much or Dr. Cottle could comment on his opinion? I know it's water soluble and stored in organs, but unsure if there might be any negative effects from large doses. It seemed to slow my loss of control, but I'm still loosing a little more each day. Any reply(ies) I would greatly appreciate. I also has some specialized spectoptropy mri's to base comparisons of cancer spreading/ scar tissue surgery damage and compare with neuropathy changes from the chemo drugs to try to help determine causes. At an impasse like you and want to say good luck and follow any info on your thread because I may have certain spinal damage from the matastisided cancer and know little about medicine, but have degeneration and need to learn more quickly.
    Tim Dawson 2 Replies
    • October 18, 2013
    • 04:27 AM
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  • Thanks for everyone who has posted here. Turns out that he did have Lyme disease, despite the initial test result showing that he didn't. What we learned from this experience is that indeed, what they say is true: Medicine is an art and not an exact science. The original doc who tested him for Lyme, not a specialist, said the result was negative. Years later, a specialist says that it is. He has been doing special antibiotic IV treatments, and he has partial mobility restored in his arm that had previously not moved at all.Just wanted to give the update.
    helpingfriend1 6 Replies
    • October 24, 2013
    • 02:33 PM
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  • And Dr. Cottle declared that Lyme disease was not applicable? He who thinks he knows everything there is to know, is handicapped by not being able to learn more. Humility is a wonderful, life affirming and noble virtue, and a sign of a great soul. Why are so many MD's arrogant? They soon become the ones who know the least.
    Anonymous 1 Replies Flag this Response
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