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Whats test to ask for
Long story short...My husband fell in Aug. By Sept 14th he was pretty much unable to walk. He was hospitalized for a week. During this time he lost bladder control and bowel function. That has returned. The Nuero Surgeon said there is nothing we can do surgically. We have since been to Mayo Clinic and saw a nuerologist. He did a nuero exam and also said that there is no surgery to fix this. He said the problem is neurological and ordered many tests. CT, MRI, EMG, Vascular study, Sensory evoked potential and a spine center consultation. We have no idea what to think except that they may looking for MS. Some of my husband symptoms are Foot Drop, Weakness in legs, Dizziness,Tremors, Fatigue, Temperature intolerance and muscle cramping. He also has liver function problems and low platelet counts. Are we crazy to be thinking this is MS? My husband is 48 yrs old and went from active and outgoing to being in a wheelchair and using a walker. I dont really know what to ask the nuerologist at our next visit Nov 19th.
CT study has nothing to do with diagnosing MS, neither does the EKG, Xrays or Vascular study, per SE. My read on this is that the suspect that the problem in Neurologic in origin and they really don't know what it is. They are hunting for diagnostic signs to your husbands condition.
The problem in that just about anything related to neurology that you type into Google will spit back MS. Google tracks terms and how often the appear together. MRI and MS have a high concurrence rating in Google's database, so MS will pop up in a lot of searches for MRI.
It is best not to "diagnose by Google." MS is not diagnosed by tests. It is diagnosed by ruling out everything else. You need to give the doctors more time to gather data.
Bob
The problem in that just about anything related to neurology that you type into Google will spit back MS. Google tracks terms and how often the appear together. MRI and MS have a high concurrence rating in Google's database, so MS will pop up in a lot of searches for MRI.
It is best not to "diagnose by Google." MS is not diagnosed by tests. It is diagnosed by ruling out everything else. You need to give the doctors more time to gather data.
Bob
We tried calling Mayo yesterday to find out what the Neurologist suspects and why he is doing these tests but were hit by resistance. The Neurologist never called back but someone else did and basically said that we needed to talk to the Dr about it at the next appointment. Well the next appointment is after all the tests are done so that was no help. We just want to know what he thinks. When we went to Mayo we thought the problem was a back injury and that my husband would need surgery. That evidently is not the case so we are very confused.
I did some research on the tests that were ordered and it seems like they are trying to rule out or diagnose MS. My husband has had MRI, CT, Xray , EMG and a Neuro exam. Now they ordered another MRI, SEP, EKG and Vascular study along with a Spine center consult. We have not talked to the Neurologist since these tests were ordered. He ordered them after we left his office.
We just dont know what to think. The dr put him on Gabepentin at a dose of 2700mg a day and the pain is better but he still cant walk more than half a block without having to sit. He is so fatigued and dizzy.
I did some research on the tests that were ordered and it seems like they are trying to rule out or diagnose MS. My husband has had MRI, CT, Xray , EMG and a Neuro exam. Now they ordered another MRI, SEP, EKG and Vascular study along with a Spine center consult. We have not talked to the Neurologist since these tests were ordered. He ordered them after we left his office.
We just dont know what to think. The dr put him on Gabepentin at a dose of 2700mg a day and the pain is better but he still cant walk more than half a block without having to sit. He is so fatigued and dizzy.
Ah, okay, the physical therapist- I misread what you said (though some PTs are DPTs-doctors of physical therapy). I had a physical therapist who expressed he didn't know why the doctor had sent me there when he (the PT) felt I needed surgery. I did wind up eventually getting the surgery I needed. So sometimes, those physical therapists can be pretty smart!
May I offer a suggestion? Could you try placing a call and leave a message for the referring doctor asking him what he is trying to rule out with this referral for testing? Or is it one of those specialists who doesn't bother to have anyone call you back if you leave a message?
Also, the squeaky wheel often gets the grease and if you don't have one of those HMOs like I do where the HMO gives approval for testing only on a specific day and makes the referring doctor's office have to call to get the authorization changed for a different date in order to change your appointment... if you don't have that red tape, you could try to see if there is a cancellation list for any of the testing/appointment times and get on that and also even call a couple of times a week to find out if anything has opened up, explaining the severity of your husband's symptoms. They might just go that extra mile, even if it's for the sad reason they don't want to keep getting phone calls from you about it.
Once, if I remember right, I got an appointment with my internist at the time on short notice because he had jury duty but had called in and didn't have to go in that day. Someone might decide they don't want an EMG or something. It often pays to be pro-active in trying to get appointments expedited.
May I offer a suggestion? Could you try placing a call and leave a message for the referring doctor asking him what he is trying to rule out with this referral for testing? Or is it one of those specialists who doesn't bother to have anyone call you back if you leave a message?
Also, the squeaky wheel often gets the grease and if you don't have one of those HMOs like I do where the HMO gives approval for testing only on a specific day and makes the referring doctor's office have to call to get the authorization changed for a different date in order to change your appointment... if you don't have that red tape, you could try to see if there is a cancellation list for any of the testing/appointment times and get on that and also even call a couple of times a week to find out if anything has opened up, explaining the severity of your husband's symptoms. They might just go that extra mile, even if it's for the sad reason they don't want to keep getting phone calls from you about it.
Once, if I remember right, I got an appointment with my internist at the time on short notice because he had jury duty but had called in and didn't have to go in that day. Someone might decide they don't want an EMG or something. It often pays to be pro-active in trying to get appointments expedited.
Its actually the Physical Therapist that is treating him as a Ms patient. So far the Drs have only said that his problem is neurological and have ordered more tests. We just dont know what they are thinking he has. It is very difficult to have a month between appt with the neurologist and have no idea what he is thinking is wrong.
Since your doctor says she's treating your husband as an MS patient, I believe they definitely would be looking at MS as a possibility while they are trying to come to pin down an accurate diagnosis with appropriate testing. And don't worry if they do an MRA/MRV- it's not invasive imaging.
You should stop driving yourself nuts. At this point they are looking for clues and diagnostic signs. I don't think they are looking for a specific diagnosis, but more going down the list of things to rule out.
I think they are looking for several things. MS is possible, Other Cerebral Vascular Event, etc Anything that might explain a CNS cause for sings and symptoms that are inconsistent with the mechanics of the injury sustained in the fall. Depending on the results of the MRI, I would not be surprised if they did an MRA (Mag Resonance Angiogram.)
I think they are looking for several things. MS is possible, Other Cerebral Vascular Event, etc Anything that might explain a CNS cause for sings and symptoms that are inconsistent with the mechanics of the injury sustained in the fall. Depending on the results of the MRI, I would not be surprised if they did an MRA (Mag Resonance Angiogram.)
we talked to Pt about the balance issue yesterday and she said that she wants to wait until after the next set of tests at Mayo. SHe is sending a letter with us to give to the Dr. She said that she has treated MS patients for about 15 years and right now she is treating him as an MS patient. She has been working with us since my husband went into the hospital.
The next tests are another MRI, SSEP, Vascular study, electrocardiogram, and a spine center consult. Then we meet with the nuerologist. This is all at the Mayo in one day.
The next tests are another MRI, SSEP, Vascular study, electrocardiogram, and a spine center consult. Then we meet with the nuerologist. This is all at the Mayo in one day.
The dizziness could be cerebellar (hind brain.) Work with the Neurologists. Ask about the PT about Vestibular Therapy. Dizziness (in this case it is more like Inability to Balance) requires Inner ears and sensory data on joint position and pressure to be provided to the cerebellum. This is not like Objective or Subjective Vertigo where you spin or the room spins around your or you are pulled just left or right. To me it seems the cerebellum is trying to balance, but ther may be delayed or out of sync data. Again, there are tests that provide data about vestibular and cerebellar issues.
Bob
Bob
My husband descibes as this....he says that he has to think about moving his left foot and leg to get them to move. The right moves but is real slow. He has to hold on to smothing, be it the walker or someone else to walk and look kind of down. If he looks up the dizzy gets worse. hHe describes the dizziness as not like the room spinning but rather like being on a boat (side to side). Not real sure what that means but seems signifigant to me. He olny walks about 40 to fifty feet and then needs to stop and rest. 3 months ago he could keep up physically with our 22 year old son.
ALS is a Grey Matter disease that progresses to the white matter motor cortex. It is a voluntary muscle disease. Fatigue and muscle "cramping" are not typical. The hallmark of ALS is loss of voluntary muscle strength then the ability to control voluntary muscles. That why I said dizziness is not seen in ALS. Dizziness is Vestibular/Cerebellar. MS foot drop and ALS foot drop are also different. In ALS, you will have problems volutarily pulling the toes up. In MS foot drop, you can usually pull the toes up, but tripping and foot drop amy be more of an issue of proprioception (again, cerebellar.)
Physical findings are very important. .
Bob
Physical findings are very important. .
Bob
With endocrine, I was thinking more of the fatigue and temperature intolerance symptoms. Has he had his thyroid function checked for example? The potassium can be high if they leave the tourniquet on too long before drawing blood, but I would recommend he get that re-tested since you say it came out high- did the doctor order a re-test? Because of the ulcer in his throat- did they make sure he didn't go anemic?
Regarding ALS, one of the symptoms can be stumbling on uneven pavement due to leg weakness, it looks like on one web site. It's one of the neurological diseases they rule out in part with an EMG, but Bob may be right, not thinking this is likely to be your husband's problem.
Regarding ALS, one of the symptoms can be stumbling on uneven pavement due to leg weakness, it looks like on one web site. It's one of the neurological diseases they rule out in part with an EMG, but Bob may be right, not thinking this is likely to be your husband's problem.
Hi there,
Welcome. The neuro should review all results so far with you and provide some insight as to what is going on.
If a diagnosis or cause is not provided after full review of current test results, you can ask:
-What has been ruled out as a possible cause based on test and exam results?
-How will this affect his current ability to work or function daily?
-Since in a wheelchair, what are next steps in terms of disability if even temporary?
-What can be expected in terms of lifestyle changes.
Definitely discuss your fears at the end w/the doc. This is important and will give the doc an opportunity to elaborate on what is going on if he/she's not done so earlier in the appt..
In prep for this visit, bring a pen and paper to jot down what you can about what the doc says. And, make a note to yourself to get a copy of all test results before you leave the office. You can actually do this in advance of the doc coming into the room, When you check in, notify the office staff that youi will need copies of reports before you leave.
Thanks for joining us. Hoping for the best for hubby. This must all be such a blow to the two of you and you family.
I hope he sees some improvement.
-Shell
Welcome. The neuro should review all results so far with you and provide some insight as to what is going on.
If a diagnosis or cause is not provided after full review of current test results, you can ask:
-What has been ruled out as a possible cause based on test and exam results?
-How will this affect his current ability to work or function daily?
-Since in a wheelchair, what are next steps in terms of disability if even temporary?
-What can be expected in terms of lifestyle changes.
Definitely discuss your fears at the end w/the doc. This is important and will give the doc an opportunity to elaborate on what is going on if he/she's not done so earlier in the appt..
In prep for this visit, bring a pen and paper to jot down what you can about what the doc says. And, make a note to yourself to get a copy of all test results before you leave the office. You can actually do this in advance of the doc coming into the room, When you check in, notify the office staff that youi will need copies of reports before you leave.
Thanks for joining us. Hoping for the best for hubby. This must all be such a blow to the two of you and you family.
I hope he sees some improvement.
-Shell
I'd assume that "in the hospital for a week" and Mayo would have done a Chem-24. Most of the common stuff would have popped up. The big test is the MRI of the brain. If he has periventricular, brainstem or cervical lesions, that is going to complicate any evaluation of a spine injury.
I'm guessing that the doctors went down this road was that his physical exam did not make sense in terms of the level of his injury. What I mean by this is: "if you blow out a disc in your lower back and have arm pain, that is inconsistent. In order to have arm pain it has to be in the arm, the neck or above.
I wouldn't be too concerned about ALS. Balance issues/dizziness are not hallmarks of ALS. As you said, the Liver and platelet issues existed before the injury and my be unrelated to the neurologic issues.
It may not help to say this, but at this point, I think the MRI is the next big diagnostic step.
Bob
I'm guessing that the doctors went down this road was that his physical exam did not make sense in terms of the level of his injury. What I mean by this is: "if you blow out a disc in your lower back and have arm pain, that is inconsistent. In order to have arm pain it has to be in the arm, the neck or above.
I wouldn't be too concerned about ALS. Balance issues/dizziness are not hallmarks of ALS. As you said, the Liver and platelet issues existed before the injury and my be unrelated to the neurologic issues.
It may not help to say this, but at this point, I think the MRI is the next big diagnostic step.
Bob
we have done an extensive workup on the liver and platelet levels. The Dr at that time said that we may never know why he has it.
no one has mentioned a potasium problem. his last blood counts show potasium at 4.9 ( slightly high).
the dr has said nothing about a spinal injury. mri shows slightly bulging disc but not the cause of the problems according to the nuerologist and surgeon.
as for losing blood, they have checked all his organs. he did have an ulcer in his throat but that came from the hospital giving him morphine for 3 days and not realizing that he was having an allergic reaction to the morphine.
nothing has been said yet about endocrine hormonal imbalance
. probably because the dizzy started after the fall he took.
he also has a hand tremor and has had for a few years now. he is unable to do things like tying his own jigs to go fishing. he shakes too much. he is afraid to walk without his walker due to feeling like he is going to fall over.
no one has mentioned a potasium problem. his last blood counts show potasium at 4.9 ( slightly high).
the dr has said nothing about a spinal injury. mri shows slightly bulging disc but not the cause of the problems according to the nuerologist and surgeon.
as for losing blood, they have checked all his organs. he did have an ulcer in his throat but that came from the hospital giving him morphine for 3 days and not realizing that he was having an allergic reaction to the morphine.
nothing has been said yet about endocrine hormonal imbalance
. probably because the dizzy started after the fall he took.
he also has a hand tremor and has had for a few years now. he is unable to do things like tying his own jigs to go fishing. he shakes too much. he is afraid to walk without his walker due to feeling like he is going to fall over.
I think it is right for the doctor to look for things like MS and ALS or any neurologic disorder they are trying to look for. Did tests prove he didn't have a spinal injury with his fall?
Have your doctors looked into why the low platelets and problems with liver function? Has your husband been exposed to any chemicals that might explain it for example? (A lab book I have lists that as one of the causes of low platelets).
Regarding the muscle cramps and muscle weakness in the legs- did they make sure there wasn't a potassium deficiency also?
Re: the temperature intolerance and fatigue- did they explore endocrine hormonal imbalance possibilities?
Re: dizziness and fatigue- did the make sure he isn't losing blood somewhere and that he's not suffering from anemia?
Have your doctors looked into why the low platelets and problems with liver function? Has your husband been exposed to any chemicals that might explain it for example? (A lab book I have lists that as one of the causes of low platelets).
Regarding the muscle cramps and muscle weakness in the legs- did they make sure there wasn't a potassium deficiency also?
Re: the temperature intolerance and fatigue- did they explore endocrine hormonal imbalance possibilities?
Re: dizziness and fatigue- did the make sure he isn't losing blood somewhere and that he's not suffering from anemia?
Yes he was put on steroids in the hospital. He is now on Gabapentin 2700 mg a day. The liver function has been there for many years along with the platelets. Maybe that they have nothing to do with MS. When we asked the 1st Nuerologist if he could do back surgery he said that that was the least of our problems. That is how we ended up at Mayo. We went there hoping to get back surgery and was again told that back surgery was not an option by the Nuerologist and the surgeon. Then next thing you know we are having appt after appt and not sure what they are looking for. I did some research on nuerological disorders and it looks like they are trying to diagnose or rule out MS. Am I crazy to think this? My husband is not getting worse but is also not getting better. Physical Therapy comes in 2 times a week and he is still only comfortable in the wheelchair. He said that the dizziness and fatigue make him afraid he will fall.
Sorry to hear about you family's troubles, I'm 48 and being worked up for MS. It happens.
Looks like your doctors are starting with the correct tests. MRI (Brain & Spine), EMG, SSEP. That should give them valuable diagnostic data. When he was hospitalized did they try a course of IV Steroids? The liver function and low platelet count are odd ball signs that do not fit with MS.
Bob
Looks like your doctors are starting with the correct tests. MRI (Brain & Spine), EMG, SSEP. That should give them valuable diagnostic data. When he was hospitalized did they try a course of IV Steroids? The liver function and low platelet count are odd ball signs that do not fit with MS.
Bob
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