Diagnosis Mystery

[MrsK]

Hi, this is my first time posting on this forum. My husband has been undergoing investigations since January this year for what they originally thought was diabetic polyneuropathy but now they know it isn't. Since January he has gradually lost the use of his legs. He is unable to walk except very slowly with a walking frame and we use a wheelchair if we go out anywhere.

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.

Many thanks,

Mrs K.

[NHE]

Welcome to ThisIsMS. I believe that you will find a supportive community here. I hope that you can find some help for your husband.

NHE

[lyndacarol]

I echo NHE in welcoming you to ThisIsMS, MrsK.

[euphoniaa]

Hi Mrs. K and welcome! Your husband's story is indeed confusing and I wish you both well in finding answers - especially if they lead to something more easily treatable than MS. Even though many of his symptoms are obviously neurological, and therefore MS-like, he doesn't show the more typical signs like brain lesions. It's too bad for all of us, but there isn't a single symptom or sign that is unique to MS - even lesions.

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:

Currently I think the progression of the disease has slowed, maybe plateaued.

One other reason I stopped in is to clarify a comment you made about your husband in the Friends & Family Forum:

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.

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.

For you and others looking for symptom information, here's a link to Clonus, Myoclonus, and the rest of that MS symptom glossary.

http://www.mult-sclerosis.org/clonus.html
http://www.mult-sclerosis.org/myoclonus.html

The whole MS symptom glossary:
http://www.mult-sclerosis.org/mssymptoms.html

[want2bike]

Sympthoms of mercury poisoning are the same as with MS. If your husband has amalgam fillings you might want to see a mercury free dentist. They have instruments which can test the mercury vapor being released. There is also a problem with vaccinations and eating the wrong kind of fish. Google mercury poisoning and get as much information as you can. My last trip to the emergency room one of the doctors suggested I showed signs of MS in my lower body. That was not the problem. Once I got on a detoxification program and had my amalgams removed all the MS sympthoms went away.

http://www.videosurf.com/video/amalgam- ... 1-66846751

[MrsK]

Thanks for the links want2bike and euphoniaa.

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.

[want2bike]

Testing for mercury is very difficult since the problem exist in the tissue and not in the blood. Mercury travels to the various organs in the body and causes the problem. I had a urine test and hair test. They did show mercury in my body but within the acceptable limits. There is no safe level of mercury in the body. I had over 10 root canals and a variety of amalgam fillings. The more fillings you have the better the chance that it is the problem. I related my problem to some recent dental work I had done. Important to understand when the problem started and what was going on at that point in time. I started a detoxification program by Dr.Tom McQuire and after a few week all my sympthoms went away. Think his book is around $20 and it explains the supplements you can take to get the mercury out of the body. If the doctors can find nothing it is worth a try. If you decide to have the filllings removed it is important to go to a mercury free dentist that knows how to do it correctly. If they do not do it right your husband could get even sicker.

http://www.dentalwellness4u.com/mercury ... rcury.html



http://www.videosurf.com/video/multiple ... s-81761590

[MrsK]

Many thanks want2bike for those links. I spent hours going through them and other links. It really does make you want to get rid of all your amalgam fillings. You have obviously had personal experience with this.

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.

[want2bike]

Keep in mind that once you removed the amalgams you still need to get the mercury out of your body. This is done with taking the vitamins and supplements. Your diet also does this when you eat the raw fruits and vegetables which have the vitamins and minerals your body needs. Doctors are the third leading cause of death in the USA. This is from their own journal. When you put drugs in your body the body must get rid of them. True health come from the diet which will give the body what it needs to heal itself. Mercury can effect the body chemistry and change the balance of various metals.



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

http://www.drkaslow.com/html/mercury_s_influence.html

[civickiller]

i would recommend going to a Upper Cervical Dr. and get tested to see if he could benefit from this kind of care

here is alittle bit of information, just gotta look through the threads
http://www.thisisms.com/forum/chiroprac ... tment-f50/