Recently the doctors have pretty well ruled out MS - although there is still the possibility of a rare form, perhaps late onset Primary Progressive MS. Over the last few months he's had 3 full torso and brain MRIs - all of which are pretty normal, nothing showing that would confirm an MS diagnosis. He's also had a PET scan which was also completely normal and CT scans. Recently he had a spinal angiogram which was normal.
When they do electrical studies on him such as nerve conduction tests and evoked potentials they find there is a very long delay in the message travelling from say brain to foot - longer than they usually see in MS patients but similar. They think, like MS patients that whatever is causing this is causing demyelisation, which is why I thought I'd try this forum, even though it probably isn't MS.
In January this year my husband was still walking, but by the end of the month was using one cane, then two. His disease progressed rapidly and alarmingly in the first three months of this year. When the doctor asks him to close his eyes and he moves his feet up and down my husband can't tell which way his feet are. When he walks with the walker he sort of scissors his legs and can tread on his own toes without realising it. Bladder and bowel are also affected but he is not incontinent.
We live in Sydney, Australia and have seen a lot of doctors here. The case has been presented twice to a group of neurologists, and we had lots of questions about lifestyle and the possibility of some sort of poisoning.
Blood tests are slightly abnormal but not dramatically enough to explain the symptoms. He has low copper and high zinc and this can be a cause of neurological symptoms - but again they need to be much lower/higher. He is also slightly anaemic.
He has been treated for CIDP (Chronic Inflammatory Demyelating Polyneurophathy) with IVIG and plasma pheresis with no improvement - in fact the disease progressed while this was happening. Soon they will be trying him on pulse steroids - high doses over 3 days intravenously. The difficulty with this is that he is diabetic and blood sugar will probably go through the roof.
Currently I think the progression of the disease has slowed, maybe plateaued.
I'm not sure what else I can add but any ideas, suggestions etc. would be greatly appreciated. I have had a quick look through this site but need to explore it more thoroughly. If these issues have been discussed elsewhere please point me in the right direction.
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I'll also add that peripheral neuropathies can share some of the same symptoms, and I have HNPP, which, as I've read, can present like CIDP. It's impossible for me to even sort through my own symptoms and assign specific blame to one of my many medical conditions.
Good luck to you and I certainly hope that your comment below is true:
One other reason I stopped in is to clarify a comment you made about your husband in the Friends & Family Forum:Currently I think the progression of the disease has slowed, maybe plateaued.
I believe the term you were looking for is "Clonus" or else "Myoclonus," which are characterized by jerky movements. I've had those at times, and also tremors and weird spasms, but I'll remind you that MS is so unique to the individual that you're bound to find at least one person here with most any symptom you can come up with - even if it's caused by something other than MS. We're a really sickly group.He also gets a violent leg trembling (I think they call it cronus) and spasms which often happen while he is asleep. Do people with MS get this too? It wakes us both up.
For you and others looking for symptom information, here's a link to Clonus, Myoclonus, and the rest of that MS symptom glossary.
The whole MS symptom glossary:
http://www.videosurf.com/video/amalgam- ... 1-66846751
The doctors have considered mercury poisoning and he is currently having a full heavy metal blood screen, amongst other tests. He does have a lot of amalgum fillings and we have considered having them removed.
He is borderline low on copper which can cause neurological symptoms but is super rare. It is apparently linked to zinc somehow and when someone has too much zinc in his system it will leach out the copper. My husband had a very high zinc in his 24 hour urine but it was within normal range in his blood, and it is possible the zinc may be coming from his insulin injections as it is used to bind insulin. This may simply mean that his kidneys are working well in getting rid of it. He's being retested for this too.
When we had the last case presentation the doctors asked lots of questions about the possibility of some sort of poisoning. It can happen when someone eats a peculiar diet for example (e.g. a lot of seafood - large fish like tuna can have high levels of mercury and other heavy metals because they're like the scavengers of the sea). It can happen when people eat dirt or swallow coins, and it can happen accidentally but we are not aware of anything like that.
It would be interesting to know if other people with MS and/or other similar conditions have been tested for heavy metals. I will watch those videos again but I don't think there was any mention of testing for mercury in the blood or urine or any other parts of the body. Surely it would show up somewhere if it is leached out of fillings.
Many thanks for your replies.
http://www.dentalwellness4u.com/mercury ... rcury.html
http://www.videosurf.com/video/multiple ... s-81761590
My husband's neurologist rang last night and he's booked in for pulsing steriods next week which is being coordinated with his endocrinologist. I hope it works. IVIG didn't work, nor did plasmapheresis.
Not all the blood test results were in but there was no problem with mercury. Copper is a bit low again, but not low enough to be meaningful. The acceptable range is 12-20 and my husband has had it tested three times now: initially it was 13, then 12, and the most recent is 11. His White and Red Cell counts and a few other things are similarly decreasing over time. The neurologist is going to discuss these results with a haematologist.
From my reading and some of these videos on mercury it seems to me that my husband's problems are very similar to some sort of metal toxicity. The neurologist said he's keeping an open mind on it. It also appears that the results can vary day to day for blood tests, which is why he is testing and retesting in the hope that one day something shows up.
There's not much on copper deficiency on the net. There's quite a lot about too much copper but my husband has the opposite which is very rare.
There's such a lot to learn and even though my husband doesn't have MS his symptoms are very similar and this looks like a very useful forum for us.
http://video.google.com/videoplay?docid ... 0466113431#
http://www.bing.com/videos/search?q=joh ... FORM=VIRE4
http://www.healingdaily.com/Doctors-Are ... the-US.htm
http://www.healthforyou.org/m/minerals/ ... ndrome.htm
here is alittle bit of information, just gotta look through the threads
http://www.thisisms.com/forum/chiroprac ... tment-f50/
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