My Mom is NOW completely disabled. Please read & respond with your thoughts/suggestions. WWYD?

[danalyn]

Hello. Well, well this is NOW the 2nd time I've tried to post this. The first time, I spent about 25m trying to "find the right words" only to have my post vanish.

The reason I am posting this is to see if anyone here has any thoughts/ info / ideas / suggestions.

My mom will be 59 this OCT. She is wheel chair-bound, in a nursing home, cannot take care of herself AT ALL. She has no balance. I once read a report that mentioned "cerebellum atrophy". I've heard the word "ataxia" . I know ataxia is basically the name for a group of symptoms. I was also once told that she has CIDP. http://www.ninds.nih.gov/disorders/cidp/cidp.htm

I live a 15 hour drive from her. I left my home state in 1992. I was 21 years old. i am the oldest of 4 kids. My mom suffered a devestating emotional blow when my dad left her in 1988. At the time I was off at college, and my younger siblings were home (ages 1, 8, & 11). My dad was/is a dr. and he took care of her financial needs for the most part, but as each of my siblings grew up his support became less and less. She finally lost "our home" about 6 or 7 yrs ago. As we think back, she showed some signs of having "something physically wrong with her". She had a funny way of walking. She suffered from depression, but for the most part she was "functional". When she lost her house, she went to live with her parents, about 3 hours away. Just 3 years ago she was able to take a greyhound to visit us. Now she can't even feed herself. My grandma and my aunts are still a big part of her life. She lives near them. They see her nearly everyday. According to my grandma, my mom has seen the "top doctors". Every once in a while (few mos) she goes to the U of M for medical reasons. To my knowledge, nothing much happens there. My grandma tells me, "every test under the sun has been given, and all the results show a perfectly normal and healthy woman." My grandma has told me that the U of M docs have been in touch with the "mayo clinic". I can tell you, that NOTHING is being done. She won't even participate in PT. When I saw her in March, I was shocked to walk in and see her with her legs stiff, straight out as she was sitting in her chair. She was also being spoon fed. She's down to about 80 lbs. She's always been thin but 80 lbs is crazy.

I guess what I'm getting at is this: WHAT DO YOU THINK? I'M NOT EXPECTING ANSWERS, JUST SOME THOUGHTS. OPINIONS. I'M "ONLY JUST NOW" THINKING THIS IS A VACCINE INJURY. AM I CRAZY? Am I crazy for not thinking that earlier? Anyway, who would I contact? I'm trying to find out what shots she has in the last 20 years. As of lately, I've been scouring the internet for ALL info I can find. And things have been falling into my hands. My husband and I do not vax our kids so its not like this is all new to me. My kids are 1, 3, 5, 8, 11, 14. The oldest was vaxxed until age 4 or 5. Whatever the schedule was back then, he didn't get the shots they say you need for K. This whole thing with my mom has been so painful to watch.

anyway, if anyone has anything to say or advice to give, thoughts, opinions, I would LOVE to hear it. yes, I'd love to get her up here to live with us (or in a nursing home, as I cannot provide the kind of medical care she needs) but she refuses. Her "mind is there" though she has lots of short term memory loss. thanks for listening. I hope to just get some input.....

[2boyzmama]

What makes you think vax injury? It sounds like there could be something neurological, but as for what the cause may be, heck it could be anything from multiple sclerosis to lyme disease to mini strokes!

I think I would start by typing search words like "regressive adult" into webpages like wrongdiagnosis.com and see what comes up. Type in any word you have seen on any reports (ataxia, cerebellum atrophy, CIDP, etc)

Who is her guardian? Find out who that is, and find out if you can get copies of medical records.

What kind of Dr is your dad? What does he think about all of this? Do you still have contact with him?

[Marnica]

First of all Im so sorry about your mom. How sad and painful for you to have to see

As for the notion that it is a vacine injury. I think it would be very hard to even begin to consider that until you had wayyyy more facts. I may consider it if her symptoms started after a vaccine. I would want to know which vaccine and how soon after did sje start having issues.

The thing is that vaccine injury leaves physical problems/injuries that show up on diagnostic tests doesn't it? Such as stroke or brain swelling...stuff like that. The thing is most docs will deny those things were caused by the vaccine (unless they happen IMMEDIATELY afterwards.) A They'll say it was cooincidental. You are saying she has had all these tests and they all come back as normal??

That leads me to believe that either it is psychologiccal in nature or that it may be from something like mercury posioning or something an alloptahic doc might not be apt to consider or look for. Has she had her heavy metal levels tested? You made it seem like no stone has been unturned in terms of tests so???

[ma2two]

It sounds like it could be a problem with the immune system, since things got bad after devastating emotional blows.

You should look into low dose naltrexone, because it strengthens the immune system, and has been found to be helpful in a ton of different health problems. It is also the most cost effective thing you could try because even if insurance doesn't cover it, it is only $30 per month. It is very safe and very easy to take--just once at bedtime.

I suggest that you read this website very thoroughly. http://www.lowdosenaltrexone.org/

I'm sure that if she got vaccines throughout the years, they were a contributing factor. But I don't think that focusing on that would be helpful, other than to make sure she never gets another vaccine again.

[danalyn]

2boyzmama: Please correct me if I'm wrong, but isn't neurological damage one of the possible "vaccine injuries"? Dont vaccines contain "neurological toxins"? wh I've been told, my mom has been tested for "everything under the sun", including MS. I just texted my Grandma, asking if she could tell me again. As far as I know, my mom does not have a "guardian". I'm going to check into that, too. My dad is an Internist. He's not involved with my mom in the least. Though he did go down to visit her, with one of my brothers. He was shocked and bewildered. Throughout the entire '90s he advised her to see a neurologist. She never would. She literally did not begin medical care until she could barely walk. She started falling all the time. First it was an occasional fall. Then all the time.

[Pattyla]

Look into Lyme disease and get her tested with Igenex.

Also see if you can get her tested for heavy metals. Does she have much dental work?

[34me]

I hope you get some answers, she deserves it. One of my employees had Cerebral Cerebeller Atrophy, most of the symptoms seam to fit.

[MeepyCat]

I think that if my mom displayed these symptoms and I was getting information as maddeningly unspecific as you're getting, I would be climbing the walls, but it doesn't trip my radar for vaccine injury.

The answers you're getting from your grandma strike me as typical for a person who is either in deep denial or who has trouble understanding what the doctors are telling her. (I've read a little on ataxia and CIDP and it is my opinion that many, many people would have trouble understanding this. I got through it by reading slowly and looking things up. If a doctor sat me down and told me these things, in big words, about someone I love, I doubt I would retain much of anything.) If she was once diagnosed with CIDP, she's not perfectly healthy, and it's unlikely that doctors are saying so. You need to ask more specific questions.

Grandma says "every test under the sun," you ask, "which tests did she have last time she went to U of M?" Follow up with specific possibilities: have they tested her for lupus? For lyme disease? Has she ever had an MRI? Nerve biopsy? Spinal tap? Does she have celiac disease? Has she ever been on anti-epileptic medication? Does she have sensory problems as well as trouble moving? (Also, and these are the ones you really may not be able to get answers from your grandmother on, does she have any hereditary conditions, or a history of drug or alcohol abuse? What about HIV or hepatitis?)

It's unlikely that your grandmother will be able to answer these questions, so ask her instead if you can talk to your mother's doctors, or if you can get copies of the test results. Ask who her doctors are. Insist that you want to be in the loop on this, that you need to know what's happening and who is taking care of your mom.

[soso-lynn]

Get a copy of her medical files. That needs to be the very first step.

[2boyzmama]

Originally Posted by danalyn

2boyzmama: Please correct me if I'm wrong, but isn't neurological damage one of the possible "vaccine injuries"? Dont vaccines contain "neurological toxins"? wh I've been told, my mom has been tested for "everything under the sun", including MS. I just texted my Grandma, asking if she could tell me again. As far as I know, my mom does not have a "guardian". I'm going to check into that, too. My dad is an Internist. He's not involved with my mom in the least. Though he did go down to visit her, with one of my brothers. He was shocked and bewildered. Throughout the entire '90s he advised her to see a neurologist. She never would. She literally did not begin medical care until she could barely walk. She started falling all the time. First it was an occasional fall. Then all the time.

Yes, it's certainly possible, but like I said, there are literally dozens of causes of neurological symptoms! I'd definitely suggest that you get copies of her records, and ask specifically what she has been tested for. Sometimes the tests are hard to interpret, so something like MS or Lymes Disease can be hard to diagnose the first time...or second or third even!

Has she had MRI and CT of her brain? Checking for de-myelinating disorders? If she's had one scan previously, she should have another to look for changes. Could she have PKU?

[beep]

To my way of thinking, it might be most useful to focus for now on what can be done for your mom going forward. E.g. why is she not getting PT? Does she have the best wheelchair for her? Does she have an effective way to communicate? What is available to make her daily life stimulating and meaningful? It may be fruitful to try to get a handle on her medical circumstances as part of exploring these issues, but it seems like it may help her most to focus on what can contribute to good quality of life now. It sounds like it also might be useful to talk with her doctors or read her records if your grandmother can't be very specific.

[danalyn]

I agree....

....wi th basically everything you all have said in response to my orig post. I am in the process of communicating with her doc from the U of M. I want my mom out of the nursing home she's in, and somewhere better. I have no idea where "better" is. My grandma is a confused individual. She's loving and has a good heart and of course wants the best for her child. But it's too much for her to handle. And I think she just "doesn't get many things". There's so much that she says that contradicts something she previously has said. I need to talk with a lawyer. My grandma is nearly 80, and now she's dealing with a second round of breast cancer. I know it doesn't do any good to try to figure out "where" and "why" and "how" this happened. But I can't help but wonder.....

I did remember this: Sometime in 2002 or early 2003, my mom received a "round" of vaccinations so she could go on a missions trip to Africa. I realize that she had been showing signs and symptoms of something being wrong for quite some time. In the year 2003, after her vaccinations, she got so bad that she could no longer live on her own. She had to give up her house and move i with her aging parents. Apparently, no one can make my mom do anything. And I guess that makes sense. How can you force a woman to do something against her will? This is what I mean: she doesn't want to take any meds, she doesn't want PT, she doesn't want to come up here to live, she wants to live at my grandma's house but my grandma "can't handle it, can't take care of her". Obviously, I don't think living at my grandma's is an option. My mom needs serious, intensive medical care. So, i don't know what else to do, or say about this situation. I do know that I'm looking forward to actually speaking with her U of M doc this week.

[Iucounu]

I don't think it is a vaccine injury

In the lack of any evidence of a vaccine injury, I certainly would not look at that as the cause. It can be difficult when a loved one declines, and we may get so exasperated that we'lll consider anything.

Your situation points out the self-fulfilling nature of the whole "vaccine injury" subculture and phenomenon. (Vaccine-related injuries do exist, but they are quite rare, and not generally due to "heavy metal poisoning", etc. etc. etc.) Since a great many people get vaccinations at some point, due to their recognized and recommended use across the civilized world, whenever someone gets sick, it may be within years of vaccinations. Then, a suspicious mind may instantly draw a link to the vaccinations, though there is no more evidence linking the two than linking the illness to that big stack of pancakes the patient had the weekend prior to the diagnosis.

The question you have to ask yourself is whether you want to throw caution to the winds and trust in junk science as a pathway to saving your mother, or whether you want to explore whatever pathways real science has to offer. If you want to explore alternatives to medicine and science, I would still continue to use medicine and science as well. Either way, I am sad for you and wish you the best.

[Otto]

Originally Posted by danalyn

She mentioned "a mutation of cell 13".

I think that's "chromosome 13," if you're looking to do more research. Best wishes.

[danalyn]

thanks, i think the doc said "C 13". wish i had it "record" on the phone when we spoke....

[danalyn]

I just wanted to post that today (Sunday) my mom's doctor from the U of M actually called me. She will be sending me a copy of my mom's complete medical record(s). It was very hard to follow and understand much of what the doctor told me, but I was told that my mom has a "neuro degenerative" disease. Her muscles are stiffening and they expect that to continue. The doctor told me there is no treatment. This is a genetic disorder. She mentioned "a mutation of cell 13". She told me that there are "no known cases of *anyone else* having the same DNA mutation with the same physical symptoms. This doctor told me that a "world renouned neurologist" has been and is still working on my mom's case. She said this other doctor is trying to reproduce this DNA mutation in labratory rats. ? Regarding the muscles stiffening: my mother's voice is very "forced sounding". i'm not sure if you can imagine what i mean, but it's very deep and hard to understand. I was told this is because her vocal chords are becoming stiff.

Anyway, I didn't say anything to the doc about vax injury. You know, this has been so hard. Watching this happening to my mom over the years, even from a great distance as we are 2 states away. Even in just 3-4 short years. It's unbelievable that they just "don't know", that there is "no treatment". I've considered many "possiblities".

[heathergirl67]

OP- I'm glad you're getting some answers, at least. So it sounds like it's a genetic disorder and not a vax reaction? Genetic meaning it might be inheritable? I know that if a family member is not all there mentally you can file for guardianship, so that you can make decisions in her best interest. Like medical decisions, where she lives, etc. If you get to speak to her doctor again I'd ask if she's at that point yet. She also might be able to help you balance the need for her day-to-day care against her need to be near the top in the field of her condition. I'm sorry that you are having to go through this. Let us know how things turn out!

[AtYourCervices]

My mind immediately jumped to Wilson's disease. It's been mapped to chromosome 13, causes the neurological symptoms you mentioned, causes atrophy in the brain, and vaccinations can deplete the zinc level thus raising the copper level which can trigger the condition to become worse (Wilson's disease is a genetic disease that results in an accumulation of copper in the tissues).

I suggest you look into the condition further. I'm curious to know what your thoughts are.

[DLsGroovyMoM]

I'm a nurse and have worked with a Neurologist. We had 2 patients in particular that sound similar to what you are describing. They also had been to a host of other doctors with each saying they had no idea what was going on. Just to cover his bases the Neuro retested a few things. One test he did was a lumbar puncture to check for things such as MS. During the LP he began thinking out loud and said "it's worth a try" and once he collected all his specimens he allowed some of the cerebrospinal fluid (CSF) to leak out into a waste tube. All the tests came back normal, no new meds or anything else was done but the family reported marked improvement in the patients. Turned out to be Normal pressure hydrocephalus (NPH)
http://en.wikipedia.org/wiki/Normal_..._hydrocephalus
Each of the two patients were scheduled for routine (every 3-6 months depending on how soon their symptoms returned) lumbar puncture. Both went from being wheelchair bound/unable to care for themselves to fully functioning on their own within 1-2 weeks of the LP.
Since you mentioned ataxia, and the symptoms sound somewhat similar you might want to check into this, it is a very often overlooked condition even by the "top" people in the field. I know for me it was amazing to see such a turn around in these two people.
Hope you get something figured out soon!

[EarthMamaToBe]

NPH can be devastating and is often mised for years,