CSWriter's Thread

[cswriter]

Maybe I shouldn't jump in before reading all the post but my symptoms are much like hh1313's and I haven't used any medication besides Tylonal. My mother died of ALS and my grandmother had Alzheimer's disease. To me the diseases looked like the same thing, only one destroyed the mind and the other destroyed the body. I am 70 and full of life, as a glass is full of water, so it is easy for me to let go and I have prepared for this because of caring for both my grandmother and mother. From my point of view, the worst thing would be to continue experiencing what I am experiencing and not have a diagnosis. I have just done the blood test and I am waiting for results.

Kahill Gibran said we talk when we do not have peace of mind, and knowing something is causing me very noticeable symptoms and not what, has disturbed my peace of mind. I am considering living with a granddaughter who has two children for a few reasons. A strong reason is to help them, and my great grandson promised to hug me each morning. The way I am feeling and the increased frequency of bad days, leaves me feeling unsafe to live alone. I have a weaker interest is maintaining the active life I have had because of the physical symptoms, and yet I want a meaningful life. Loving my great grandchildren and living them, seems to me a good solution, especially my granddaughter is paid for caring for me. That would mean being family, and having an income. But I also have concerns about this. What do you think?

 

[Clearwater AL]

CSwriter, if you read hh1313's entire thread you'll see that two very knowledgeable members assured her that her symptoms were not ALS related.

Your post, mostly just personal thoughts, really isn't applicable to this sub-Forum...

Do I have ALS? Is this ALS?

Have you been seen by a Neurologist yet?

PS "The obvious is that which is never seen until someone expresses it simply. Khalil Gilbran.

 

[GregK]

Chill, Al. This was a reply to that other thread that I moved instead of simply deleting.

My bad for not mentioning that.

 

[Clearwater AL]

Ok Greg... I'll chill. As you put it.

Still... might help for future posts if CSwriter tells us if he/her has been seen by a PCP or a Neurologist.

 

[cswriter]

I share a lot in common with hh1313 and I apologize for wrongfully posting in hh1313's thread.

You can delete this thread. I will stop logging in and just read the replies to hh1313.

Thanks.

 

[Clearwater AL]

CSwriter, there was some misunderstanding here (on my part - I admit my mistakes) but being that your Mom died from ALS you could be a valuable contributor to the Forum. Some of your symptoms may be similar to hh1313... but you may have others.

And, with your Mom dying from ALS have you sought care/consultation from a PCP or a Neurologist?

 

[Nikki J]

You mentioned " the blood test". As there is no blood test for ALS I am wondering if you refer to genetic testing?

I am going to comment assuming that is so. I know how difficult the wait for results is. I am sure you have been counseled that being gene positive does not mean you have ALS and will not give you a diagnosis. And unless there is an identified familial gene for your family a negative test does not rule out a pattern as not all genetic defects for ALS are known. They probably tested for c9orf72? If there is a familial aspect it is definitely a likely culprit. Should you be positive it will raise suspicions but given that it can not diagnose you or clear you completely I hope you are pursuing whatever diagnostic path necessary to find out the cause of your symptoms

 

[cswriter]

CSwriter, there was some misunderstanding here (on my part - I admit my mistakes) but being that your Mom died from ALS you could be a valuable contributor to the Forum. Some of your symptoms may be similar to hh1313... but you may have others.

And, with your Mom dying from ALS have you sought care/consultation from a PCP or a Neurologist?

Thanks, Clearwater, I was spinning out of control. I have been having trouble for a long time, and as things rapidly escalated I was sure I had ALS like my mother. Reading the explanation given to hh1313, that these sensations clearly are not ALS has modified my panic. Reading about myopathy leads to questioning if I have cancer causing myopathy because I have other symptoms that could mean cancer. I need to follow through with the MRI my doctor suggested a month ago, because of intestinal problems. I didn't want an MRI because they are so expensive, and if I have cancer, oh well. But as those symptoms could be connected with other symptoms, perhaps I should find out?

I have multiple medical conditions, and my efforts to get to a neurologist have been frustrated for years! I turned to you guys in panic and desperation, after years of frustration! Are any of you old enough to have a doctor reply to everything, "well, you know you have arthritis"?

If my mother had had breast cancer it would not take years before a doctor finally started testing for the cause of my symptoms if the symptoms followed a family history. I am sorry I had a bad reaction to the question of if I have seen a neurologist. No, I have not seen a neurologist and the last time I saw my doctor I was determined to not leave his office without a referral to a neurologist, and his once again talk of why he is not referring me to a neurologist resulted in me losing all my composer and telling him the visit was a waste of time, and walking out. I have been frustrated for many years. I wish my doctor had not once again spoken against me seeing a neurologist and instead explained the blood test would indicate if I should see a neurologist. [U]You all have helped me a lot[/U]. But know, I have requested blood tests in the past because a neighbor with MS advised me to do so, and my concerns were dismissed, until the last visit when blood tests were ordered, but I didn't know this comes before seeing a neurologist, only that my doctor has dismissed my concerns for years.

This is humiliating as I facilitate a workshop on healthy living and one of the things we cover is how to communicate with the doctor. In the past my symptoms were tolerable, so I didn't carefully document everything as I should have. It was not until I took exercising seriously that it became real obvious my symptoms are not because of normal aging and sitting around too much. Actually, until the symptoms advanced to my arms, I thought my leg problem was caused by experimental back surgery, that may have exchanged terrible back pain for the loss of control of my legs. I wish I had documented and kept records of my condition before that back surgery for my own memory of the progressive leg problem. I was going on the belief that exercise would resolve my problems until my symptoms got really bad and started in my arms too.

Bottom line- I just did 3 blood test and am waiting for results, and I have not seen a neurologist.

 

[cswriter]

You mentioned " the blood test". As there is no blood test for ALS I am wondering if you refer to genetic testing?

I am going to comment assuming that is so. I know how difficult the wait for results is. I am sure you have been counseled that being gene positive does not mean you have ALS and will not give you a diagnosis. And unless there is an identified familial gene for your family a negative test does not rule out a pattern as not all genetic defects for ALS are known. They probably tested for c9orf72? If there is a familial aspect it is definitely a likely culprit. Should you be positive it will raise suspicions but given that it can not diagnose you or clear you completely I hope you are pursuing whatever diagnostic path necessary to find out the cause of your symptoms

Considering the life decisions I am making, I would love to have the genetic testing but that is not the testing I am waiting for. I waiting for the diagnostic test.

My rent has jumped so I have to make a housing decision, and my immediate condition is important to that decision. I may begin sharing a rental with my granddaughter and her two children, and I think we need to be informed about my condition and what might be required for my care. I took my grandmother with Alzheimer's into my home when I had teenage children at home, and I would slit my throat before putting someone else into the position I was in. My mother with ALS and my grandmother were not easy people to care for. It just is not fair for a care giver or children when someone's neediness means no one else's needs are met, so I am really okay with institutional care. My community has some very nice assisted living facilities and that might be a better choice if I can get housing assistance for that? But if my condition isn't too bad, I have so much to give and would love helping her with the children.

I want to clarify it was not my mother's ALS that made her difficult to care for. It was her attitude and unresolved life issues that made her difficult to care for. After caring for her I volunteered to help care for a young man with ALS and that was a wonderful experience. Guy will hopefully always be in my memory. He would patiently listen to me complain about my pain and difficulty getting around, until I would realize how glad he would be to endure my problems if he could walk across the room and do for himself. He was a big inspiration to me and I was able to rewrite my bad experience with my mother. In the end I walked away with a very good memory of a man who did an excellent job of finding happiness and relating to others. He is my role model, not my mother!

 

[Nikki J]

Good for you for reaching out and helping that man.

Diagnostic test for what? Not for ALS. There is no blood test currently avsilable that is diagnostic for ALS though progress is being made.

Housing issues are so very hard. If you move in with your granddaughter will she move to a different place? If she would end up relying on your financial help to live in a place that worked when you are there and you had to move out that would be bad. If you are moving into her current place and she would be no worse if you left that sounds like a plan until you know better what is happening

 

[Clearwater AL]

CSwriter, trying to be nice here... you can on with these lengthy life personal replies but as you wrote... (" and I have not seen a neurologist.")

Really, everything is speculation until you do.

(" I would love to have the genetic testing but that is not the testing I am waiting for. I waiting for the diagnostic test.') ?

Today, unlike years ago, many Neurologists and Neurological centers do not require a referral from a PCP. As concerned as you are concerning ALS playing out in your remaining years... try making some calls.

Again, really, everything is speculation until you do... unless my reading comprehension skills are now beginning to fail also.

Try it...

 

[cswriter]

Good for you for reaching out and helping that man.

Diagnostic test for what? Not for ALS. There is no blood test currently avsilable that is diagnostic for ALS though progress is being made.

Housing issues are so very hard. If you move in with your granddaughter will she move to a different place? If she would end up relying on your financial help to live in a place that worked when you are there and you had to move out that would be bad. If you are moving into her current place and she would be no worse if you left that sounds like a plan until you know better what is happening

Let me begin with we don't know what we are testing for, only that I am having problems. Thanks to the forum, I know it is not ALS. Could it be Myopathy or some other form of MS as my neighbor with MS suspects? We don't know. But it sure is not imagination! My friend is very frustrated because I wasn't diagnosis sooner. She has been pushing me to see a neurologist for years.

Please understand, I am very happy where I live now and have many friends. These friendships have been established over 10 years. Moving really is about helping my granddaughter and her children. Especially if I have a serious medical condition, I am much better off with my elderly friends who have their own health problems and can relate to what I am going through. And I sure as blazes don't want to cause my granddaughter a problem!

This whole thing is just bad timing. The property manager where I live wants me to sign a lease or the increase in my rent will be even higher. I don't want to commit to another year here if I can help my granddaughter and her children. She has a history of being homeless and is at risk. I have a close relationship with her son because I had him in my home when they were homeless. It was her risk of being homeless again that lead to us seriously talking about sharing a home. Her rent also jumped and her income is very insecure. Living together is about protecting her and the children and reducing her stress to increase the chances that she get past her problems and finds better solutions. I am on a waiting list for senior housing and we both understand sharing housing is temporary.

:lol: All our plans were based on me not having a serious health problem. But you know stress makes everything worse, and my symptoms went from challenging and thinking I could exercise the problem away, to oh my goodness, I better pay attention to this.

I am concerned that I don't qualify to be a member of the forum. I don't have ALS, I can't find the rules and my post in other threads are deleted. I don't want to be a problem to my granddaughter, I don't want to be a problem to Clearwater who announced having a problem replying to my post, and I don't want to be a problem in the forum either.

I have heard in England it takes at least 5 years to establish friendships. Being the new person in any group is hard. And sometimes a person shouldn't even try to enter an exclusive group. The thought of leaving all my established friends seems a really bad idea. But at my age, our friends leave us. The best I can do is help the children, and hopefully, my health makes that possible.

 

[Nikki J]

I understand your confusion. People who are here asking about possible symptoms are called DIHALS and asked to confine their posts to their own thread on the DIHALS subforum. The issue that is confusing is because you do have ALS experience but your post on the general forum alluded to your current issues which was not allowed.

Now where does England come into this? Is your granddaughter in England? Are you a British subject if so? There are multiple issues moving to the UK even so if you would not be working.

 

[Clearwater AL]

CSwriter... I've been accused of being too frank at times... here goes

There is no reason for you to post here any further.

Your lengthy essays of your personal plights have nothing to do with this Forum.

As you wrote...

("I am concerned that I don't qualify to be a member of the forum. I don't have ALS,")

There it is.

I hope your health issues get resolved and your personal issues work out.

Take care.

PS Sorry Nikki... you posted while I was composing.

 

[cswriter]

How about judgmental, intolerant, disrespectful and controlling, and if you do not reply I will lose my ability to find this forum again, so I suggest you do not reply.