mri may indicate als - freaking out - thought?

[Concerned Me]

any input is so appreciated - my husband is 41 and he said his current main symptoms are knee pain, hip pain, pain in the back of thigh (muscle type -pulled muscle type), pops and clunks in many joints, vision went worse quickly (needed bifocals instead of his regular glasses almost overnight but does not seem to be getting progessively worse) - also has vitamin d deficiency - is on vit d once a week supplement now -- his level was 25.8 and it notes on the report normal is 30-100, doc said if in office most of the time this could be the reason and he is indoors most all of the time). MRI brain to rule out ALS and MS report reads as follows:

magnetic resonance images were performed on a 1.5 tesla magnet using multiple pulse sequences. Additional sequences were obtained with the administration of intravenous gadolinium. There is no evidence of mass or abnormal enhancement wit contrast. Ventricles are symmetric. There is very minimal symetric T2 hyperintensity at the level of the corticospinal tracts, at the level of the internal capsule and extending inferiorly along the cortiscospinal tracts to the cerebral penduncles. Hyperintensity of the corticospinal tracts is seen with amyotrophic lateral sclerosis (ALS) but the appearance on the MRI images is too suble for this diagnosis by MRI and this appearance can also be seen normally. No definite hyperintensity is appreciated superiorly at the level of the precentral gyrus. There is a subcentimeter linear oriented hyperintensity adjacent to the atria of the left lateral ventrical which is nonnspecific. There is no evidence of demylelinating plaques for multiple sclerosis.

** also mentions that he has some sinusitis, mucosal thickening and an 8 mm muscosal retention cyst at the anterior lext maxillary. no evidence of mastoiditis.

impression:
there is very subtle symmetric T2 hyperintensity at the level of the corticospinal tracts but this can also be seen normally. Therefore this is not diagnostic of ALS by MRI and the significance would depend on clinical findings. There is nonspecific linear hyperintensity in the white matter adjacent to the atrial of the left lateral ventricle.


he seems to feel that his symptoms are consistent with early ALS and that with this mri he is definite. wdyt? also - regarding his pain - if he stays on 600-800 mg of ibuprofen around the clock it helps but he does not take it because he would have been taking it for 3 months now and he does not want to mask symptoms while being diagnosed....

pls lmk if there is any other informaiton you would like to have and any input is so appreciated

 

[Moonmark]

Hi Concernedme--

is your husband seeing a neurologist specializing in ALS and other neuromuscular disorders? I can understand that it must be very worrying to read an MRI report indicating that some of the findings are seen in ALS, but it is puzzling to note that the same finding can be found in healthy individuals. not sure what to make of that. It is my understanding that MRIs are conducted to rule out other diseases, not to diagnose ALS, so I am not sure I would make too much of that particular finding. I am not a medical professional, though.

has your husband had a nerve conduction (NCV) study done or an EMG? The EMG in particular shows findings that help to support a diagnosis of ALS, while abnormalities on the NCV study would point to other problems.

Maybe others on the forum know more than I do about the use of MRI in helping to diagnose ALS, but I have not heard of it being used as a diagnostic tool for ALS and you should be heartened that the report states outright that the finding is not diagnostic for ALS. I think you have to be careful with the interpretation by the radiologist and wait to hear what the neuro (hopefully, one specializing in ALS) has to say. For instance, in my own situation, the brain MRI shows several scattered lesions in the white matter which the radiologist reviewing the scan said were indicative of Lyme disease, multiple sclerosis, stroke, migraines, or drug toxicity. In his report, the radiologist directs the neuro to "correlate with clinical findings." I won't bore you (at least, too much :winkwith my 9 month or so history of muscle weakness, fatigue, twitching, excess saliva, muscle/joint pain, prickly sensations, etc. etc., but I tested negative for Lyme, have no drug history, have not had migraines, and the neuro who reviewed the MRI said the lesions are not consistent, in his opinion, with MS, although that potential diagnosis still seems not to be completely and definitively ruled out for me and neither has ALS, apparently. And who knows what else. It seems to be a waiting game, for me at least. I will be monitored at 3- to 6-month periods, depending on how things progress. I had a normal EMG in June on three limbs, which gives me great hope that something other than ALS is afoot for me. I think you should insist on having this test done on your husband, if it has not already been done.

I know how hard it is to live with fear and uncertainty and worsening health problems with no answers.

Hang in there--

Sandra

 

[trfogey]

First of all, you really should be directing these questions to your doctor and not to a group of strangers on the Internet. Nor should you be looking up details from test reports on the Internet. Why? Because you don't really have enough information or training to make sense out of all the additional information you are going to get. That is why you are scared right now. You have bits and pieces of a story, and few clues to help you solve the mystery.
The only one who is going to be able to put all the pieces in place for you is your doctor.

For what it is worth to you, and I am not a doctor, your husband's symptoms don't sound like ALS to me. From what you described in the first part of the post, I'll bet that the MRI was done to determine a reason for the rapid deterioration of your husband's vision. The note that they made concerning ALS appears to be a hypothetical to account for something else that they noticed while they were doing the test. Without further evidence or more symptoms, there would be no reason to diagnose ALS and I don't think they've done so here.

Good luck to you.

 

[Concerned Me]

thnaks for your replies. the reason that I am posting here is because our neuro appt is a month away and my husband is so freaked out that he cannot function so i am only trying to get more information and maybe some opinions from people who know more than we do.

Sandra, I have been checking into Lyme's too and i know that you tested negetive but don't stop there....I have come across so many stories of people who have similar to ALS and many other neuro diseases that claim it was really high stage lymes and that with iv anitbiotics they are improving. they also test negetive frequently. i have no idea but it may be worth pursuing for you since you don't have a definite diagnosis.

thanks to you both for your replies and I wish you the best.

I did have one more question. My husband thinks that he notices weakness in his legs etc but it is difficult to measure this.... If you have experienced this symptom how were you sure that it really occurred and was not you arbitrarily deciding it did, relying on your memory etc....
thanks

 

[rose]

...

he seems to feel that his symptoms are consistent with early ALS and that with this mri he is definite. ....

Concerned,

By "he" I'm assuming you mean your husband? In reference to ALS, I can only echo what trfogey has already said . But for emphasis, to me, an untrained anonymous person on the internet, (rather than a doctor with years of training and experience that has examined your husband in person) it does not sound even a little bit like ALS.

more thoughts...

If your husband is able to forgo pain meds for months worth of diagnostics, he probably is making himself more uncomfortable than he needs be for no useful reason. If a doctor does not want a person taking over the counter or prescribed meds for help with finding an underlying cause, they will advise the patient to stop them for a set period of time.

For what its worth, my vision went very quickly when I was about 40. It has no bearing on the health problems that cropped up for me 12 years later. From my limited knowledge as a lay person, the only possible significance of his vision changes, (other than he is officially middle aged) is that he could be beginning with cataracts, or, a long shot, may develop narrow angle glaucoma, (which I have) Its nothing ominous, it just has to do with the shape of the eye inside. Virtually EVERYONE over the age of 40 has the beginning of cataracts. So, if bifocals are needed earlier in life, it is an indication that there is less room for the rods and cones. If he has brown eyes, that could also come into play because brown irises are thicker than lighter colored (again, taking up more room).

For the record, narrow angles can easily be corrected as an office procedure by a glaucoma specialist using laser. I've had both eyes worked on twice now, and the whole thing only takes a few minutes, I could drive afterward, and wear eye makeup during it (not that he would LOL)

Good luck to you both, I hope he will be able to stop self diagnosing for a worst case scenario.

p.s.

Weakness isn't something a person would decide they have. A person notices it because they can't do something they used to be able to do in everyday normal activities without any thought at all.

 

[olly]

hi concerned me.
theres nothing in the mri report that would indicate als...........and there would not be.
mnd very rarely shows on mri ,if it does it would show degeneration of the corticospinal tract (not my words but from neurological studies)
i have pls/mnd and my mri's were very good,i do know of only one person were it showed on mri.

i have to agree with everyone else that it does not sound like als,really you need to see a als specialist.