I am so sorry for what you are going through and I hope that it turns out to be something treatable. It must be bad enough watching your wife suffer and the worry you must be feeling must be over bearing, and my thoughts are with you. I wanted to add something to the MRI question. Can MRI be used to diagnose ALS/MND? This is asked quite a lot on this forum and I recently read something that may be of interest so bear with me while I explain in my usual long winded way ( I can hear some of you sighing already).As we already discussed in another post although some people may not wish to rush into a diagnosis, for some an early diagnosis of ALS is necessary to facilitate access to insurance claims, to certain drugs, future care plans etc. We also discussed how some people never fulfil the full criteria so cant access all the specialist care programmes for this disease, and never receive the full support they need to make important future decisions on ventilation etc. It is also important for clinical trials to get patients early in disease stages where the therapies may have a chance of working, rather than late stage when most of the damage has been done, i.e. stopping the degeneration rather than having to reverse it. It is the goal to speed diagnosis up. Neuroimaging is one avenue which has attracted a lot of attention recently. Many studies claim this change on MRI or that change on a PET may be a positive sign of ALS. However it is very mixed up and nothing consensus seems to have emerged. There was a recent (2014) in depth summary of all the literature in PubMed examining if neuroimaging ( MRI and PET) had been able to consistently identify any marker (signs) that meant the patient likely had ALS. This is different from how MRI is currently used in ALS diagnosis. i.e. it is mainly used for a differential diagnostic work up, i.e. to exclude MND mimics. ( Link to paper below for those who are interested).The paper is called Lessons of ALS imaging: Pitfalls and future directions —A critical review Peter Bede * , Orla Hardiman So simply put the authors trawled through all the combined studies and published data and asked…..OK we know MRI can tell us when something other than ALS is causing these symptoms, but can we turn this around and use MRI to find some changes that we would only see in ALS patients. Can we use MRI/PET to build up a neuroimage criteria that will be able to positively aid the diagnose ALS.Importantly here is their conclusion Quote: “While neuroimaging in ALS has gained unprecedented momentum in recent years, little progress has been made in the development of viable diagnostic, prognostic (disease progression) and monitoring markers.” So here was their reason for this conclusion, with my notes added in brackets Quote : Common shortcomings, such as relatively small sample sizes ( I noticed most of the studies only had 12- 16 subjects), statistically underpowered study designs ( used the wrong statistic methods), lack of disease controls, poorly characterised patient cohorts ( for example they only aged matched and sometimes gender matched, but did not take into consideration, education status, right or left handedness etc etc all which inflluence neuroimaging), and a large number of conflicting studies, remain a significant challenge to the field. Imaging data of ALS continue to be interpreted at a group-level, as opposed to meaningful individual-patient inferences.The paper did acknowledge that MRI has been useful to advance our understanding of the mechanisms involved in progression of ALS, but tangible changes that could be defined as SPECIFIC markers of ALS were absent and unreliable. Interestingly they discuss future technological advances that may contribute greatly to this field. I have listed them for easier reading.1) 7T MRI systems (remember we talked about 3T over 1.5T systems in another post, well this is 7T (quote “ 7T promising unprecedented resolution and detailed spectroscopic evaluation” ) 2) They suggest the use of post-mortem MRI studies which method is increasingly being used in other neurodegenerative conditions, but never in ALS yet.3) Quantitative muscle MRI is another relatively overlooked field of ALS biomarker research . (Note: This is an automated measure of muscle strength and health i.e. not based on physical assessments of the patient where the measurement is more variable and dependent on patient effort. So it is more accurate and reproducible. 4) whole-brain MRS is a promising technique and its potential in ALS is currently far from being fully explored. (MRS is short for brain magnetic resonance spectroscopy)5) They also said that despite a number of very successful spinal cord MRI studies ( Valsasina et al., 2007 ), quantitative spinal imaging are underutilised in ALS.6) The emergence of combined PET / MRI scanners 7) access to magnetoencephalography (MEG) are other exciting developments which are likely to contribute to our under- standing of ALS pathophysiology ( meg is short for Magnetoencephalography there is a good article on Wikipedia on it for those interested. ( bit too technical for me ).So hope this answers somethingHX
The neuro exam i had some weakness in my tongue, some slurring, and weakness in my arm and back muscles. Again he said it could be a virus, or some other neurological disorder and is sending me to another Neurologist with very impressive credentials as he said my symptoms are asymptomatic and need more investigation. At first he was shocked that the Radiologist would put that the results suggest ALS, but after the exam he seemed to think the two could be related. His words on the MRI were "non specific findings" but with other symptoms could be used to identify MND. I am not a kid with anxiety, I am a business exec with a family, I know what anxiety feels like but this is bigger. What confuses me is the brain fog, my intolerance to alcohol, and the fact that I don't feel weak physically, just mentally exhausted.