New to this forum... facing possible ALS diagnosis...

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aprildawn

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Hello everyone. I just found this forum and have read a bit and noted that newcomers seemed welcomed. I am facing a possible diagnosis of ALS though have had trouble getting health care providers to even care about giving me any diagnosis or hope of finding the cause of my issues. I have suggested ALS after doing some reading and knowing I have a strong family history of ALS. My paternal grandfather died of it many years ago. His brother's (my Great Uncle) cause of death was unknown due to religious issues that kept him from medical care but now 2 or 3 grandchildren of that relative have been diagnosed (all brothers).

I have had an MRI that was at first thought to be 'normal' but after personally viewing the pics with a radiologist it was discovered that there is indeed something there. Apparently the Dr that made the original request did not state accurately what they should look for. Anyway, two radiologists conferred and sent a new message to the original Dr with recommendations of further tests (CAT of my hips & pelvic region). I am waiting to hear from that Dr, as it has been barely one working day thus far since this all came about.

The Radiologists are considering several pretty serious diagnosis but are not saying what they might be until further tests are run but I was the one that brought up ALS, due to the heredity factor. I'm so tired of begging doctors to care about my issues that I feel are getting progressively worse! If anyone has anything to share about initial stages leading to their diagnosis I would be interested. Thank you for bearing with me.
 

Theresa2004

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Hi April. Many of the smarter members of the forum are baking in the warm sun for a Canadian long weekend, so I am sure they will be popping into say hi soon.
I am sure they will ask this, so I will give them a lead in. What have been the symptoms which prompted you to see medical attention.
 

Jerry Story

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I am facing a possible diagnosis of ALS though have had trouble getting health care providers to even care about giving me any diagnosis or hope of finding the cause of my issues.
Anyone who is interested in ALS should read the book "Excitotoxins" by Blaylock.

Ignoring this book could cost you your life, or worse.

A Google search will easily find info about the book.
 
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Theresa2004

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perhaps we should allow her time to expand on what is wrong before we jump ahead with solutions and suggestions.
Let her speak and fill in the blanks.
 

aprildawn

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follow-up to my original post

Ok, I will attempt to explain what has been happening but I fear people will think me silly to even think along the lines of ALS since the symptoms at this point do not exactly match what I have been reading about. I guess the main reason my thoughts turned towards this illness is that no one seems to be finding a cause or solution to my symptoms AND I have a strong heridity factor.

Initially I was diagnosed with arthritis several years ago. The pain has gone way beyond what I feel that illness would include, for touching even the soft tissue on the legs and arms, rather than just bones or joints, hurts. Additionally I have dealt with depression and anxiety for over 20 years. Sleep problems date back aways too. Once I was told that I was having turning off my thought processes in order to rest but now pain disturbs my sleep as well. Short term memory problems are getting worse.

The pains in hips and back did get me referred to a Pain Clinic but I got no relief. The first visit led to a Rx for Naproxin. The second visit netted me shots of steroids in the hip joint on each side. On the third visit I was referred to an Xray type clinic to have shots given that take the guidance of Xray devices to track the needle's path. I did not submit to that treatment, having heard the extreme pain my daughter experiences the three times she had that procedure done.

Currently there is concern about a lump in the upper portion of my left buttocks that was initially thought to only be a lypoma. It has been there for at least 2 years but about 6 months ago it doubled in size. I have wondered if the pressure from it might be contributing to some of my hip and back pain. Initially the Radiologist sent back a report saying the MRI of that buttocks was 'normal' but thanks to inside connections I was able to sit beside a Radiologists while he reviewed the MRI. He was amazed with what he saw! If I understood correctly it looked like atrophy of the muscle and the invasion of fat into the muscle BUT the Radiologist felt what he was seeing did not fit the common pattern. After I left the clinic he conferred with the orginal Radiologist and an addendum to the first report was sent with recommendations for a CAT of the entire pelvis. They were not happy that the MRI was only done of the left side, as comparing the two sides would have been helpful. Not wanting to unduely scare me, they have not said what they think the problem might be but I am positive that they have one or more potential diagnosies in mind that are not pleasant.

There have been times that I have been unable to bear any weight on either hip. I got no relief despite a visit to the ER. They put me back in my car from a wheelchair.On the way out of the parking lot my husband and I realized that we had no way for me to even get out of the car and back into our home! The doctors had not even supplied me with crutches! Fortunately we did have a pair in the attic, but it was discouraging to sit there in the car while he rumaged around for something the ER staff should have provided.

Ok, perhaps I am just grasping at straws. I am feeling a bit embarrased for having made the orginal post. I don't want anyone feeling I am wasting the time and energies of everyone on this list. I am just terribly frustrated and scared.
 

Jerry Story

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If you wanna make your own diagnosis (to be later checked with a doctor), you can do a Google search on diseases or more specifically on neurological diseases if you think that's what it is. You will find a list of probably nearly all neurological diseases known to man. Go thru the description of each disease, one by one. If you find one that exactly fits your case and all the others don't fit your case, then you have a layman's diagnosis. That's what I did. And it turned out to be correct. And I ain't even a doctor.
 

Granny

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Dear aprildawn,
Don't feel embarassed. Sounds like you are going through a very hard and scary time. If it helps to write it down here, then people are here who will listen. I do not have a lot of advice, but my thoughts and prayers are with you, and I hope that soon you will find an answer. The unknown is so scary . Hang in there and keep us posted.
 

me

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Aprildawn - don't feel embarrased or like you are wasting people's time. This forum is for people to ask questions and search out answers. There are people here at all stages of the illness, and some that are friends of those with the illness. Many people have come through here in the last couple of years with the fears that they may have ALS. Most do not post after one or 2 times so we don't know what the outcomes are many times. However, if it makes you feel better emotionally to be here, then welcome. While we're waiting for the "experts" to reply, let me just say that many of your symptoms do not sound like ALS. The family link would certainly make it scary. Whatever it is, it does sound scary and I really hope you are able to get a diagnosis soon. Waiting seems like the hardest thing sometimes. Be sure and read back to some of the old posts for some possible answers to your questions.

Well, I don't know if anything I said makes sense, just want you to know you are welcome here with whatever questions you have and any fears you have. Melissa
 
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