My husband has been diagnosed with Primary Progressive MS. Previous to this it was necessary to have his replaced metal hips changed as he developed Metalosis. As his walking and balance were poor it prompted his surgeon to refer him for some nuerological tests. These have led to the diagnosis. But, I can’t help wonder if the metalosis could be to blame for the MS?? One of the symptons of metalosis is nuerological problems. Was he destined to get MS anyway?? Does anyone know of anyone with similar history? I can’t let it go until someone can definately say for sure that the metal has had nothing to do with it and he was going to get it anyway?
Hi Julius, sorry to hear of your husband’s diagnosis.
I’ve never heard of metal causing MS… but really the problem is that nobody knows what does cause MS so I think you will never get an answer to this question.
As everyone on here (to the best of my knowledge) has not had Metalosis but have developed MS anyway, I think it unlikely to be any connection.
I think when we are first diagnosed we all wonder did this cause it or did that cause it… but the truth is that nobody knows. So I would advise you to try and let it go.
More important that you and your husband learn all you can about PPMS and that you cope with the emotional roller-coaster that comes with diagnosis.
We are a supportive and friendly lot on here and I hope you and your husband will join us. Between us we have more knowledge of how PPMS affects us than all the neurologists put together!
Really hope this helps. It is natural that you should look for answers, but with this one, for now, there is no answer.
Hope to see you both on here again,
Pat xx
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Ditto to what Pat says and a warm welcome to the board.
Don. X
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Hi Julius and welcome to the forum. As Pat has said nobody knows what causes ms, a study is being done to see if there’s a genetic link, worrying about that though isn’t going to help you move forward.
Please ensure that you’re getting all the help your husband is entitled to. Has he been referred to an ms nurse, physiotherapist and Occupational Therapist? They can be a huge help in making sure he’s safe and comfortable at home. Also ensure you’re getting the benefits that help make life easier.
As Pat said, the people on the forum have personal experience of ms and have been a godsend to me. You would be hard pressed to learn about symptoms or coping methods anywhere else, especially from a book. The members are all very friendly, understanding and supportive. As you may have noticed, there are so many symptoms (many being quite bizarre) and anything can be discussed. I hope you and your husband find it as helpful as I do.
Take care.
Cath x
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Hi Juluis
Welcome to the forum to both you and your husband, sorry to hear about his diagnosis.
Unfortunately, you have a question that no one can answer, because no one knows why it happens, but I suspect that we all had similar thoughts, trying to pin point why it has happened.
Please stay on the forum, lots of lovely friendly supportive people on here, with a myriad of experiences, always willing to help.
Pam x
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Hi,
What you need to remember there is no test which is positive or negative for MS. Other illnesses like diabetes there is a simple test to say yes you have it no you don’t. When doctors see lesions on the spinal cord they automatically think MS because it is the most likely. Other things can cause lesions such as lyme disease, B12 defiency, radiation for cancer and Metalosis. Lesions from what ever cause will cause the same symtoms. These problems will look more like PPMS than RRMS which is why RRMS is easier to diagnose. RRMS has attacks with recovery in between.
I have been in Limbo for several years with what “Looks” like progressive MS. I had radiation treatment for cancer in 1990 and it is possible that that caused early degeneration of of my cervical spinal cord. That is the thought of one neuro I have seen. Another has said possible Transverse Myelitis and yet a third has said possible prergressive MS.
I will never know for sure and no one can tell me so I have decided to plummit for the radiation theory. It makes sense to me as I have had several LPs and they have all been normal showing that my immune system is not active in my CNS.
MS is an auto-immune condition were the immune system attacks the myelin sheath and secondary to that nerves are left exposed and start to degenerate.
It has never been suggested that the radiation caused MS. The radiation caused inflammation at the time of treatment but nerves started premature degeneration 20 years later when I was 45.
In my opinion if the lumbar puncture is positive for the immune system being active in the spinal fluid then MS is likely. Because that is what MS is - out of control immune system.
If the LP was negative then how can they say you have MS when your immune system is not active in your CNS. Surely the damage is being caused by something else. I have done a lot of reading on this subject. In classic RRMS virtually 100% of people have a positive LP. With people diagnosed with PPMS it is only 85%. Yet doctors cant explain the discrepancy. In my opinion those 15% have something that “looks” like PPMS and the doctors cant find another label to give the person.
There are people who got inflammation of their spinal cords from injury, whip lash and from attempting hanging. Then years later have got nerve degeneration in the area of the old inflammation. Nerve degeneration is slow and therefore symptoms come on gradually and “look” like PPMS.
Sorry to go on living in limbo causes my to google too much to find answers the doctors just cant give me!
Moyna xxx
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It must be awful for you both!
Julius, A warm welcome to the forum.
Moyna, I admire how you are coping after such a long time! An incredibly understandable explanation of something quite difficult to get to grips with! Well done!
Nina x
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Thank you for your comments. Moyna, My husband’s LP was negative, which is another reason to suspect that the metal could be to blame. Yes I suppose you are right and that maybe i should let it go, it is on my mind all the time. We have an appointment with MS nurse next month so presumably she will set us straight on everything.
Thank you everyone. Moyna, Paul’s LP was negative which is one reason why i am thinking the way i am. It’s on my mind all the time, I will try to let it go. We have an appointment in April to see the MS nurse.
J
Julius it’s virtually unheard of to get an MS diagnosis with a negative lumbar puncture.
That is the question you should ask the MS nurse… why a PPMS dx with negative LP?
I can see now why you are questioning it.
Let us know how it goes.
All the best,
Pat xx
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Hi , me again.
I would not accept a dx of MS with a negative LP and as Pat says virtually unheard of to have MS with no involvement of MS in the CNS.
I would ask for treatments to remove heavy metals from the body. There are some although maybe in only alternative medical treatments. Some health clinics offer chelation therapy.
I have heard of a case were a person was diagnosed with MS only to have severe mercury poisoning. her “MS symptoms” disappeared after chelation for mercury poisoning.
Nina thanks for you comment. I have read so much around the subject… even my neuro admits that he is learning from me!
As I have had so many differing opinions about what is going on with me I have come to realise that neurology is not an exact science and that a diagnosis can sometimes be a guessing game.
My neuro had now given me statins to try and stop neurodegeneration.
Moyna xxx
I hope they help you Moyna, it’s something I’d like to try in the future…I’ve got a lot of stuff going on with changing medications at the moment so need to get that settled first.
Is it the 80mg dose?
Nina x
Yes Nina, it is the 80mg dose of Simvastatin. Which is a higher dose than normally given for high cholestrol. I have been on them for 3 weeks no with no side effects. I read in the daily mail the other day that statins can increase the risk of type 2 diabetes !
Moyna x
Moyna I wouldn’t take any notice of what you read in the daily mail (notorious for their scare stories).
Saying that, there is a lot of debate about statins. Some people get very depressed on them and some people get lots of aches and pain.
Just like with any drug, you have to ‘listen to your body’ when you are first on them… any sign of trouble, come off them again.
As a little side comment, I will add that if we all only ate meat that was reared outside and fed on grass and not given antibiotics and suchlike, and dairy products from same, we wouldn’t need statins.
In Finland they live on a very fatty meat diet, hardly any fruit or veg, and they don’t take statins. They don’t have high cholesterol and heart attack and stroke numbers are very low.
It is factory farming that has caused the problems in our diet.
Ok. I’ve had my say. Thank you and good night!
Pat xx