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Karin Bolette

Active member
Joined
Mar 14, 2010
Messages
44
Reason
PALS
Diagnosis
03/2010
Country
CA
State
Ontario
City
Toronto
Good day to everyone and a very happy New Year:
:!:
AS I posted a couple of months ago, I do not have ALS but my symptoms present as such. Relief and a thousand questions. I had a CT done of my body for other reasons and it revealed degeneration of my spine through out it. Ten years ago I stood 5'7" and am now 5'5". I was shocked. I've had neck problems since I was in my 20's, I'm now 57. I did nursing for 20 years so always assumed it was part of the job and put up. I am finally after asking neuro after neuro having an MRI done of my head, the bulbar region, my spinal cord and my entire spine. The unfortunate part many of these disorders are progressive but some are not. Surgery can cure some. But it's a wait now.

Our federal government, those who know him "Harper" was closed down Chalk River for good. He released this info 2 days before Christmas and said Canada will get their Isotopes from Russia. I was fortunate enough to have mine booked for June 2011, on Dec22, 2010. They are now booking into the winter of 2012! That's our Harper- determined to destroy our medical system here in Canada.

Anyways there are back and head problems that do mic ALS. After some research one can have difficulty swallowing, breathing, weakness through out the body and that these diseases are progressive. The only difference I have found is that while the nerves maybe pinched or damaged at source they do not document as damaged nerves within the muscles, thus EMG's are not useful as they are clean.

So those of you who have been told it is not ALS, try to accept it and go back to the very begining of your symptoms and re-evaluate what you are really suffering from. Don't waste your time being afraid of your symptoms being ALS when there may be possible cures available. After all is our symptoms that interfer with our lives and not the diease. Karin
 
So glad you don't have ALS, but it's a great pity you have to wait so long for surgery to correct the problem.

I do however need to correct you in your comment about EMGs. An E mG will pick up nerve damage as a result of any sort of degenerative disc disease.in fact the conclusion can look very similar to ALS, hence the need for a spinal MRI if you have a " dirty EMG ( hate that term), that points to a possible radiculopathy.
 
Aly,
I don't think that Karin was implying that she was waiting for surgery. I can't see that degenerative disease of the spine necessarily requires surgery.

Karin,
In my province any urgent case does not have to wait for an MRI or Cat scan. I have literally been booked within one day for a brain scan when I had an episode of double vision for one day!Having just had surgery last week when I fell and fractured my elbow, I don't have any complaints about our medicare system. My custom-made arm brace ( in colour and pattern of my choice LOL ) was free as is the physio that I am about to start. Not bragging - just giving credit where credit is due.

Lorna
 
Hi Lorna: I love our health care system passionately and hate to see it in crisis. Yes I agree with you that in emergencies one can still get an MRI within hours and that is as it should be. I was just shocked to hear that many people will need to wait to get an MRI for diagnoses purpose- possibily longer than a year and a half now. The impact of closing the Chalk River hasn't been felt across the country and I am very worried about this. We'll have to see what develops. But no one wants to have emergency treatment before they can get a diagnoses. It will be interesting to see in the New Year how our demand for isotopes from Russia will be handled. You are also right that with many degenerative spine and spinal cord disorders surgery is not possible. In my reseach as I understand, surgery is done for spurs that form on bones in the spine and that these can be removed but not always of any help. As for a EMG my doctors says it measures nerve damage at the junctin point which is not always the position with spinal problems. Anyways I'm hopefully- finally a direction that's making more sense for me, where I get better or not- I just want to know. Thanks for the feed back- karin
 
Oh sorry bout that. What's the wait for then? Confused sorry. Reread but still can't sort it out. Better go back to school! Ha ha. Are you referring to MRI wait times?
They do spinal surgery on degenerative spines sometimes, by plateing and bone grafting, or roding.
Well got to go feed my skinny horse. SPCA came today cause someone reported me! She is 32 years old and I am trying to get some weight on her old bones. I am spending a fortune on feed but to no avail. They tried to catch her and she trotted off, ha ha wish I had been watching. I just cant face getting her put down, and she is happy, bit like me really.

Off track again. Best of luck with whatever then?
Aly
 
Hi Aly:
The problem is yes the wait time of MRI"s and scans. The imaging substance that makes MRI's and othe nuclear medical equippment is isotopes, which are a bi-product from nuclear plants. Canada's main Nuclear Plant was the Chalk Rive in north Ontario. Three years ago there was a problem at the plant and they shut it down for about six months. During that time imaging tests for diagnoses was slowed down to an almost hault. There was much short term debate from the Harper Government as what to do. The Chalk River Plant was then reopened. It is one of the main plants to supple isotopes globlaly. We supplied much of the States and even Europe. Two days before Christmas, on Dec.23, the Harper Government released a very brief annoucement that the Chalk River would be closed indefinitely and Canada would now get our isotopes from Russia. Not only is Russia an unreliable source as their plants do not have the same safety regulations as those in North America and Europe. Also with the globable economics Canadians question whether Russia will met their commitment. In terms of global aliances Canada is a friend of South Korea and North Korea obviously one of Russia. If those relationships become in question then will Russia continue to met their isotope commitment to Canada and the rest of the world. The production of isotopes is entirely political and as nothing to do with saving lives and this very much worries me and many of Canadians. Our Prime Minister does not have a good reputation concerning of health care system and this will only put Canada's health care in greater danger. So at a major downtown hospital, St. Michael's are now booking MRI's well into 2012 and this scares me for many people's health will be put at risk. I'm sorry I have a political streak in me and get flustered when what we work for suddenly disappears. Have a good day Karin
 
That's really interesting. Thanks for the explanation. We have the same typeof healthcare here in NZ. I think Australia provides the isotopes. Each district health board buys a certain amount of mri's per year fr,om the private radiology companies that own the scanners. The no urgent wait time is extremely long, close to a year. However when my hubby orders an MRI for his private patients ( with health insurance) , they often go straight from his rooms to this scanner. People with money yet again get instant care, while others wait. Nothing new in that. If it's really urgent then of course it's done reasonably quickly.
The thingvthat irks me is the scanner can lay dormant some days because the hospital has used up the allowance. Sucks.

Aly
 
Karin, nurture that political streak in you! So many Canadians are complacent because we are in such a comfortable position.

Best wishes,
Lorna
 
Karen.As you have probably seen on this site it is recommended that you let the doctors due their job but unfortunately in ontario waiting for results can take to long.After a year, 1 mri and 1 emg test i have been referred to sunnybrook ALS clinic.My research and visiting this forum has given me the information to realize that some of my symptoms do not relate to ALS.Their are other possibilities that can be treated if caught in time.I almost need to diagnose myself so i can move forward and be treated.
 
Hi senior 60- I agree.

I've been trying to get diagnosed for close to 3 years and in the last year have taken the bull by the horn and done the research and presented my arguments to my GP. I was at the ALS clinic at Sunnybrook a little over a year and I can say they weren't very helpful. While they may have been had I had a dirty EMG all they said was they didn't think it was ALS and referred me back to my GP.

I spent 2 years getting my heart clear because I have a congenital heart defect and they decided my shortness of breath was due to this heart defect; but they wouldn't acknowledge my difficulty swallowing and weakness in my limbs, so after 2 years with my weakness progressing they said my heart was in pretty good shape.

Then they had to rule out a stroke, which I knew I hadn't had, but more tests and still they didn't listen to what my symptoms were. The I was sent to another neurologist who said I didn't have ALS and probably not MG put after listening to how my syptoms started 3 years ago and doing a very thorough examination, suggested I get an MRI of my head and neck.

I am finally getting an MRI of my head, neck and spine, which I had asked for way back- but what do we know about out own bodies? There are head, neck and brain system problems that present as ALS Bulbar, which is how I present. But now need to wait 6 months or longer for my MRI.

I don't understand why all of these tests aren't done at one go, like they did in the old days. But my GP has been ever so patient and I must say has supported me with requests- it's just the time used in seeing doctor after doctor, when all that really needs be done is a thorough onset of symptoms and a doctor who is like a trouble shooter. If we don't have control of our own bodies, and one must be reasonable about this with appropriate reseach the we do not get treatment, reguardless of one's disorder. We use up our energy with all these appointments and have so little left to live our lives with.

Best of luck seeing Dr. Zinnerman at Sunnybrook- let me know how it goes- all the best Karin
 
Hi Karin,

I've had the opposite problem with the primary care doc sending me to get an MRI on my back, then to a neurologist who sent me to get another mri and a emg (which she said didn't go far enough) but showed possible mn problems. On my second visit to the neuro, she diagnosed me with ALS, comforted me, gave me a form to get a handicap placard, and sent me off. She did call a couple of times, but I was too devastated to even think that my foot drop/sprained ankle and sore back was anything else but sciatic nerve (which I've had for 17 years).

I'm now going to Beth Israel Hospital in Boston (my neighbor is a doc there, got me in less than 10 days to an ALS specialist)... who told me on my first visit that except for the emg, he wouldn't have diagnosed me (yet) with ALS. Since then, I've had spine and foot xrays, more blood tests, 2 emgs (haven't had the one he wanted me to have in November yet, why bother?), a spinal, and saw the spine specialist doc, the thyroid doc, etc. I'm still waiting to hear from yet one more blood test (for Cushings Syndrome), but my Western Blot test for Lyme was negative. The main problem I have is that no one locally takes my insurance for PT, so I'm just trying to stay as active as I can. SO many appointments, and yet I'm still in ALS-limbo, no other real diagnosis at this point I guess... time will tell.

The only thing I feel lucky about is since I'm a self-employed, separated Mom of 3, that I'm on our state's health care insurance... I didn't have any insurance for a while before this, and I'm thankful that I have an affordable plan... even though I wish this happened when my hubby still had Blue Cross!

Good luck in our pursuit of another truth!

Helen
 
Oh Helen-

I'm sorry for your travels through the medical system.

I don't understand why medical schools don't teach doctors in a way that there would be a program for a Diagnostic Planning. That a doctor trained in this are is a kind of problem solver. When an MRI, x-ray or what ever is done it explores more than one disorder. This nonsense of having one disorder diagnosed at a time is ridiculous.

In the old days a patient would go into hospital for 2 or 3 days for tests and have the whole list done and at the end of the section would either leave with a diagnose or a real direction in which to go. But then medicine thought that by having patients come in for individual tests it would be less costly, but I don't think this as been the case. Instead every different doctor we see, we get another test. There's no sense of the connection of the body and the over lapping of symptoms. They take one part of the brain, then another doctor does another part and then another does the blood work and another x-rays your ankle and maybe 4-5 years later you actually get a diagnose.

I've had almost every part of my body either blood tested or ct scan or x-ray except the part that I keep telling them is the problem- the space between my brain, brain stem, ears and neck. Finally I've pleaded with my GP to order an MRI of my head and neck and when she went back to the onset of my symptoms she agreed that my spine should be included. These 2 masses I have on my head- the first neuro I saw said the head can be lumpy and ignored it. As the mass grow and I saw the neuro again (because I am a bit overweight) he told me it was just fat and not important. Then again I pleaded with my GP to have it looked into as it was causing a fair amount of tenderness and pain. She agreed and it was not just a bony bump or fat as this neuro had suggested, but edema that has moved out from inside the right side of my head to form an exterior bump and I have another one on my left temple.

I am very greatful that I have a GP now who is very supportive and can see the changes in me. But it often takes a long time to find someone who will problem solve with a patient in this way. So while specials are well trained in their areas they do not look at the whole picture. It is my opinion that they are not Gods and should be questioned when their opinion is suspect. Yes I agree that patients should not rely on the net for their answers, but that they should rely on how their bodies feel. Doctors tend not to understand that we as patients do know and understand our own bodies better then they do. So without having doctor's who is a problem solve we must make sure we have a GP that will go all the way with their patients.

Karin
 
Yale was very quick to diagnosed me with ALS. Too quick. I obviously had lyme but their policy is not to look further than the western blot ELISA tests, which are not always accurate. Some people don't produce antibodies to lyme so although I had all the lyme symptoms they plopped an ALS diagnosed on me. They did MRIs, blood tests and emgs twice over a year and that was that.

Devastated. Suicidal. the worst year of my life. Still trying to cope. Ceftriaxone has helped the ALS but my GI system is too irritated to continue.
 
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