Just Diagnosed

[Janie H]

Charlene that is a terrible thing for a nurse to say, there is no way that she could know any more than you how your progression will go, listen to Max about not falling, Tillie gives good advise also, God is the only one who knows how long we have. I would complain on her.

Janie

 

[Music67]

Charlene - after entering my 4th year with this disease and still living on my own - I've found that judging your progression is very subjective - one person's opinion. My neurologist at Virginia Mason told me that I had fast progression just after the VA stated in their initial study of me that I had slow progression. I am praying for you every night.

 

[Janbrit]

Hi Charlene, so sorry to be welcoming you here but you will find the forum a mass of information and positive thoughts from positive members xx

 

[tripete]

Charlene, I was diagnosed this past December and have found the forum to be extremely helpful. Like you, my wife, has insisted on every test she can think of.

For me one of the most confirming aspects of my diagnosis (outside of the 3 EMG's - that all showed crazy activity) was having a spinal tap done and then having the fluid tested for everything under the sun. My wife has done a ton of research on what could be wrong with me (she has been in denial since suspicion of ALS began in October - for a year previous they had been looking at heart, lungs, esophagus etc) and insisted that the fluid be tested for Lyme and all sorts of vitamin deficiencies. She also did research on what "normal levels" should be. For example different countries have different ideas of what is normal for vitamin D or E.

Like others I am sorry you have to be here. Having said that take advantage of all the knowledge that is offered, it will help you through a lot of dark places.

 

[gooseberry]

Pete, I here you about the crazy testing but interestingly both the neuro that diagnosed my husband and the VA checked vitamin d and b12 levels. Even on a low vitamin d supplement my husband was low so we had to up it. His b12 was normal. We eat a good diet, he never uses sunscreen, we live in FL, and he takes a very good multivitamin. Kind of weird.

 

[tripete]

I think we try our best (even if it seems the doctors don't) to find a solution. I had a family doctor tell me, quite honestly, "that we have to be our best advocate...do the research and insist on the test". We have tried to take this to heart hoping against hope that we can find an answer. Currently my wife is learning about the connection between the thymus gland and ALS.

In 2009 studies in Israel "Results from the current study suggest that premature aging of the immune system and thus a decrease in protection from immune T cells could contribute to the aggressive and rapid progression of amyotrophic lateral sclerosis, which attacks motor neurons – nerve cells responsible for muscle strength and voluntary movements. The researchers found that thymic malfunction occurs simultaneously with motor neuron dysfunction, both in laboratory mice bred to mimic amyotrophic lateral sclerosis and in humans suffering from the disease."

We will continue to search while preparing for the worst. At my ALS clinic session on Wednesday I plan to ask about the thymus.

 

[gooseberry]

The thing I have learned from this forum is that while the professionals say something isn't a symptom, like skin changes or body odor changes or glucose level changes, when you throw it out here to see if anyone else has the issue, you find several that do. I think there is a lot left to be learned about this disease.

 

[tripete]

Gooseberry - I couldn't agree more!

 

[anderkling]

Thank-you, Pete, for your kind words. Let us know what you find out about the thymus gland. I understand what you mean about being our own best advocate. And about how much more there is to this disease than we understand. I read a case study of someone with celiac disease who was misdiagnosed as having ALS. Apparently celiac can mimic the symptoms of limb onset ALS.

 

[tripete]

There are a lot of websites that talk about mimics. My wife, as I have said before, has been in denial about my disease. She has clung to the hope of these "mimics" as justification for her denial. This has made things hard on me as I do not feel I can openly speak to her about what to expect with ALS. She gets very disheartened and discouraged if and when I do speak with her about it. She wants so bad to find out that it is a mimic and has accused me of giving up when I mention those three dastardly letters.

I say this by way of encouraging you to never stop looking for an answer or solution but to also face what is in front of you. I have to deal with what is happening and at the same time hope that maybe it is something else that can be fixed. My wife is a loving and caring person, who found out her husband was likely to die with in five years, two months after marrying him -her reaction is understandable.

I have always been able to fix or do anything I put my mind to, unfortunately with ALS that confidence and ability has been removed from me as each day my body withers and weakens more and more. I do not know how to fight this disease, so at times with my wife, I hope that even after three diagnosis that the doctors are wrong and that we can find an answer.

 

[Music67]

Charlene - I was just reading up in celiac disease and the info I've seen mostly focuses on intestinal issues such as bloating. Nothing was mentioned about symptoms concerning limbs. Can you suggest a link for such info ?

 

[lgelb]

This is the ms I believe she refers to. It was an unusual presentation w/ family hx of celiac dz and suggestive labs.

 

[anderkling]

Actually, I found a medical research case study online about a man who presented with ALS symptoms (limb onset), and was diagnosed as such. He had no other symptoms but what are classic ALS symptoms. Many months passed and he continued to progress as if he had ALS. It turned out to be celiac disease, and once he was placed on a gluten free diet, his symptoms reversed to some extent. I asked my doctor recently to check me for celiac, and he said he already did! Back in Scotland as a young doctor he diagnosed a woman with MS, and it turned out to be celiac disease instead.

 

[swalker]

At my first appointment with the neurologist he suggested celiac as a possibility. He scheduled an endoscopy where they sampled some cells and ruled it out. He also did the blood test, multiple times, along with other tests.

I have seen LEMS discussed in other threads. My neurologist also suspected LEMS as a cause (about a year later). He tested me for that. A second neurologist (at Mayo Clinic) also performed the test for LEMS.

"Unfortunately" none of those were positive. I would not wish those on anyone, but MND kind of sucks too.

Steve

 

[tripete]

I spoke with my ALS doc and nutritionist along with nurses at my clinic visit on Wednesdays about the thymus gland and other possible nutritional issues.

The first thing the doctor said was "I don't think that removing is worth the risk of the surgery" this shocked me. I asked why would you remove it I thought that based on the Israeli study that you would want to try and "revitalize" it. He said that in Myasthenia gravis they remove it so that the body immune system which is causing some of the problem stop attacking the body (I think that was the reason he gave). He went on to explain that with ALS we are not even sure if it is an auto immune disease or not.

I also asked for blood work to be done to retest all vitamins and minerals in my body and felt like I was ignored as I never got an answer. However several medicines where strongly suggested for cramps and depression, it was suggested that I restart Riluzole at a lower dosage, and that they would let me know about a couple of drug trials coming up.

I am not what you would call an "earthy crunchy" guy but I get frustrated by the constant pushing of drugs that cause all types of side affects, that we don't know exactly what they do, while we ignore the natural ability of the body to heal itself. For the last few years I do not do well with drugs. I think part of that might be the large amount of antibiotics that doctors have had me take to try and help my breathing (which was eventually diagnosed as the beginning of my ALS). We know that large doses of antibiotics hurt the immune system.

ALS is on the rise and the average age of people getting it is getting younger and younger.... I believe this correlates with the more garbage we put in our foods and the more drugs we consume. The FDA should be thrown out the window and common sense should guide our choices not a government body with over paid officials.

This may be the wrong place for this post but it started out as a report on the thymus per anderklings request.