Update After Appointment

[brentonjb]

Greetings everyone. First I wanted to take a second and thank everyone who contributes here for their support. Not just towards myself (which has been a huge blessing), but the countless others who post daily - asking for help. There's a wealth of knowledge here, and I think it's really special that there are people, most of whom are suffering here, can take time out of their day try and aide others.

That being said, here's an update on my situation. I've just recently returned from an appointment with a head Neuro at a nearby University. I was referred to him by my local Neuro, mainly to get a second opinion on possible Nueromusclar Disease.

At present, I have an abnormal brain MRI (mild atrophy, few non-specific white matter changes), as well as brisk reflexes and spasticity in both legs. Only my legs (arms are fine). There's fasiculations as well, but everyone twitches, and mine weren't even recorded on my EMG. Otherwise no atrophy or weakness, but quite a bit of fatigue and soreness in both legs.

During the appointment we talked mostly about MS, and how due to my MRI, there's a possibility I may be in the early stages. However, I can not receive a clinical diagnosis (at this point), based on the fact that patients need to have at least seven white matter changes present in the film - while I only have three maybe four currently. As well as a clean neck / spine MRI.

At which point we talked about MND. He said the toning in my legs, along with the reflexes were concerning, but due to my age (24), and not having any weakness / atrophy - the chances of having MND are very, -very- low. He explained that while there has been cases of young people developing it, it's incredibly rare. At any rate he wants to continue to monitor my situation. Both on an MS and MND front. Which I definitely appreciate.

So at this point, while I was extremely happy to receive positive news, I suppose I'm just frustrated with the results. Both doctors are taking a "wait and see" approach in my particular case, which I understand given the circumstance / results, but I wish I knew what was really going on.

I should have be receiving some Lumbar Puncture results back in a few weeks, hopefully I'll have some more answers by then. Take care.

 

[notme]

I'd suggest you see a MS specialist if you can find one. MS is treatable--even if it's not curable. They can also treat the symptoms you're having in your legs. If you're having spasms and/or cramps, there are meds for that.

Unfortunately, MS is rather difficult to diagnose and takes some time to definitely diagnose. I believe they have to have two flares as well. MS is a much better possible diagnosed than any motor neuron disease.

Best of luck

 

[brentonjb]

Yeah I'm definitely relieved to an extent. At the same time, when mentioning my legs for example, he said that they have increased toning - and he didn't know why.

I may be wrong, but toning in the legs, along with hyper reflexes and fatigue / soreness aren't typically the presentation of people with MS. Especially early on.

Ultimately I guess I was just hoping to hear (as I've long assumed) that you don't have MND - move on with your life. The idea that I have to wait and find out is frustrating. I'm just happy at this point, regardless of how I feel / function, they're not assuming the worst.

 

[trfogey]

Given your fixation with believing you have MND, I'm not surprised in the least that he won't rule it out. The mind can do incredible things to the body when it's focused on something. It's far safer from a liability standpoint for him to give you vague answers until some time passes and your condition progresses (or fails to progress). Either way, he's got more data with which to advise you. And you might be more willing to accept the "the chances of having MND are very, -very- low" as the glass being full and not being concerned that there is still space for another drop or two before the glass overflows.

 

[Alyoop]

Brenton, fatigue, spasticity and hypereflexia can be signs of MS. MS is a bit like ALS in that no 2 people seem to present the same or follow a prescribed progression. That's why, like ALS, MS can be tricky at times to diagnose.
Aly

 

[notme]

Your brain MRI is much more indicative of MS--which can take years to diagnose. Sometimes more than one thing can be going on, too. Feel better

 

[brentonjb]

Given your fixation with believing you have MND, I'm not surprised in the least that he won't rule it out. The mind can do incredible things to the body when it's focused on something. It's far safer from a liability standpoint for him to give you vague answers until some time passes and your condition progresses (or fails to progress). Either way, he's got more data with which to advise you. And you might be more willing to accept the "the chances of having MND are very, -very- low" as the glass being full and not being concerned that there is still space for another drop or two before the glass overflows.

Sigh. Again - I do not think I have MND. I do not want to ever have a diagnosis, much less a clinical evaluation suggesting I have MND. The doctors and specialists I have seen do not think I have MND. Thus, I don't see how I am, as you say, fixated on said disease.

I am, however, frustrated by the fact that it has not (to date) been completely ruled out. That was the entire point of this particular thread; To convey my frustrations, possibly receive some support and guidance, as well as provide an update to anyone who is intrigued - perhaps concerned regarding my situation.

Conventional wisdom and logic, as well specific test results point towards MS. Something that has also not been ruled out. Furthermore, the statistical probability of someone my age developing, or having MND are very low. I'm very well aware of that. Thus it would appear, whether due to liability reasons, my current condition, or a combination of factors, that I will continue to go through this process for some time.

Thank you for the replies everyone. They're as always greatly appreciated. Take care.

 

[trfogey]

Sigh. Again - I do not think I have MND. I do not want to ever have a diagnosis, much less a clinical evaluation suggesting I have MND. The doctors and specialists I have seen do not think I have MND. Thus, I don't see how I am, as you say, fixated on said disease.

Because you are still bemoaning the fact that it hasn't been ruled out to your incredibly rigid and unreasonable standard of certainty. Because as recently as a month ago, you were digging in the archives of this site pulling up posts about bulbar ALS symptoms that you thought you had but appear to have gone unaddressed at this latest neuro visit, considering that you haven't mentioned how your new neuro resolved them.

I am, however, frustrated by the fact that it has not (to date) been completely ruled out. That was the entire point of this particular thread; To convey my frustrations, possibly receive some support and guidance, as well as provide an update to anyone who is intrigued - perhaps concerned regarding my situation.

If your new neuro had told you flat out that you don't have ALS during this visit, would you have believed him? Or would you have come back here to second-guess him and to complain about how quick he was to make that call based on

• not a thorough exam.
  
• didn't run/rerun a particular test.
  
• hasn't seen me enough times over a long enough period of time.
  
• didn't account for all of my symptoms.

I know which side my money's on.

And, brentonjb, save the whining about your frustration that ALS has not been completely ruled out for your emo friends at the coffeehouse or the student union. Any of the PALS or CALS here would be rejoicing at the news you got and all you can do is gripe that you didn't get enough sprinkles on your ice cream sundae.

Conventional wisdom and logic, as well specific test results point towards MS. Something that has also not been ruled out. Furthermore, the statistical probability of someone my age developing, or having MND are very low. I'm very well aware of that. Thus it would appear, whether due to liability reasons, my current condition, or a combination of factors, that I will continue to go through this process for some time.

Sure it will. That's how the neurological diagnosis process goes. What's entirely within your control is continuing to believe that you "might" have ALS in the face of all that evidence to the contrary. You could choose to dismiss it and let your doctor continue to worry about it. But the question remains -- will you?

 

[lydia]

Brenton,
Try not to take the bait.

There are many of us here undiagnosed and playing the waiting game. Early on it feels like you can think of nothing else, but then you just get on with life. Aly had a nice description somewhere here in the last few days of that process. Look for it.

Lydia

 

[brentonjb]

Because you are still bemoaning the fact that it hasn't been ruled out to your incredibly rigid and unreasonable standard of certainty. Because as recently as a month ago, you were digging in the archives of this site pulling up posts about bulbar ALS symptoms that you thought you had but appear to have gone unaddressed at this latest neuro visit, considering that you haven't mentioned how your new neuro resolved them.

If your new neuro had told you flat out that you don't have ALS during this visit, would you have believed him? Or would you have come back here to second-guess him and to complain about how quick he was to make that call based on

• not a thorough exam.
  
• didn't run/rerun a particular test.
  
• hasn't seen me enough times over a long enough period of time.
  
• didn't account for all of my symptoms.

I know which side my money's on.

And, brentonjb, save the whining about your frustration that ALS has not been completely ruled out for your emo friends at the coffeehouse or the student union. Any of the PALS or CALS here would be rejoicing at the news you got and all you can do is gripe that you didn't get enough sprinkles on your ice cream sundae.

Sure it will. That's how the neurological diagnosis process goes. What's entirely within your control is continuing to believe that you "might" have ALS in the face of all that evidence to the contrary. You could choose to dismiss it and let your doctor continue to worry about it. But the question remains -- will you?

Emo friends at the coffehouse? Uhm, Ok. lol. You know, I often get a kick out of your incessant trolling of my threads / posts. However, that is some serious rage right there my friend. I don't know why you're so mad, but I'm truly sorry whatever the reason may be. Stay classy.

Brenton,
Try not to take the bait.

There are many of us here undiagnosed and playing the waiting game. Early on it feels like you can think of nothing else, but then you just get on with life. Aly had a nice description somewhere here in the last few days of that process. Look for it.

Lydia

Thank you for the kind words Lydia. As I've said many times, my heart truly goes out to anyone suffering from any disease. God bless.

 

[trfogey]

Emo friends at the coffehouse? Uhm, Ok. lol. You know, I often get a kick out of your incessant trolling of my threads / posts. However, that is some serious rage right there my friend. I don't know why you're so mad, but I'm truly sorry whatever the reason may be. Stay classy.

1) I was being classy.

2) I'm not angry, never was, and you couldn't make me angry if you tried.

3) Speaking of trolls....

4) You should be sorry. See #3 above.

 

[notme]

Hey

Dr Rosenberg here in Orlando is an MS specialist. Get an appt to see him. He is the doctor my neurosurgeon wanted me to see as he's a neuromuscular/motor neuron specialist--but MS is his major specialty.

Your clear EMG/NCV can pretty well eliminate ALS---but that brain MRI certainly means something is going on. If it's even suspected heavily--they will treat your symptoms while they wait for clinical criteria for an official diagnosis.

With your symptoms--if you'd had motor neuron issues--the EMG would have picked it up, hon. I'd say you can safely rule it out. Unfortunately, I don't believe the same can be said for MS

 

[brentonjb]

Hey Notme, thank you for all of the information. Really appreciate it. Have another update to provide:

I went back to my local Neuro again this morning. Was scheduled to receive the results of my spinal tap. Everything came back normal. The doctor said based on that, and the fact that my brain MRI isn't completely indicative of MS, that it's time to start pursuing other things.

The only thing left at this point, he said, is to disapprove that I don't have MND. As in his mind I do not have MS, or any other diseases such as Lyme etc, as they've all been ruled out via MRI's, bloodwork, and the lumbar puncture. I've been scheduled for a full body EMG and NCV.

He went on to say that he does not think I have ALS, but that it's possible. His analysis is that my muscles aren't clinically weak or atrophying, but they're spastic, fatigued, and appear to be shaky while moving. Likewise he once again tested my reflexes - and noted they're definitely hyper in both legs.

I also asked him about my age (24) as being in my favor, and he said that my age didn't really matter, or save me from a diagnosis. In fact, he said, young men (albeit usually in their 30's) can and do have ALS.

Lastly he noted that two things are very abnormal. Number one being my brain MRI. He said it's simply not normal for someone my age to have atrophy of the brain. I asked him if there was a possible connection between atrophy of the brain, versus atrophy of the limbs as an early indicator of ALS. He said no, that there's nothing in literature that he's aware. Likewise there's really no explanation for the tremor I've developed in my hands / legs.

Secondly he noted that I have degenerative disc disease in the middle of my back. He asked if I had been in any kind of accidents or falls recently, and I told him no. He doesn't understand how I've developed that either. At the very least, if it were in my lower spine, it could possibly indicate problems with my legs. But definitely not in the middle portion. Perhaps, he said, it could be an early indicator of MND. Is anyone aware of this as a possible link?

Ultimately I'm just really scared, but trying to stay positive. I had previously (a month ago) had an EMG done in my legs that came back normal. Granted it was only done in my calf and quad areas. Hopefully I'll know more in a few weeks after my appointment. Praying for the best.

Take care all.













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[olly]

hi brenton.
i am sorry to hear that despite all thats going on you are unable to get a diognosis yet.
i too was evaluated for ms over several years till i got a pls/mnd diognosis.
from my experience i had a mri of brain and spinal cord every 6 months but no lesions showed up...........though i do have evidence of a spinal lesion with my dodgey left leg and one in the brain due to my balance causing me to veer off to the right.
pls causes lesions in the grey matter that can not be seen,in ms it also causes lesions in the grey matter as well as white matter.
this explains the hyperreflexia and spasticity/umn symptoms seen in ms.
given your age ms seems more likely and it may need more time to diognose.
they need to continue mri's at intervals or after it feels you have had a ms episode,this could be a new symptom or an old symptoms returning or getting worse.
by doing this they can see if old lesions have disapeared or new ones developed.......changes..............this is the main diognostic criteria.
sometimes lumber puncture results can come back ok.
i really hope they can give you something more definate..........theres a new drug just come out for ms that promises to cut down on relapses.
incidentley my aunt had ms,she started in her early 20's and was wheelchair bound but at age 55 or so before she died(brain hemmorage) she could zim about very quickly with her stick.
take care.
caroline.

 

[notme]

Dr. Vu said that degenerative disc disease could be early ALS? I've never heard such a thing. Degenerative disc disease is usually caused by an injury of some type--but I don't see how it could indicate ALS because discs are not motor neurons--they aren't nerves--they are like cushions--to keep the vertebra apart, basically.

My DDD started in my 20's as well. Blew my first disc at 24 actually. My spine from neck to lower lumbar is total crap--but in all my reading and talking to doctors--I have NEVER even heard of it being a possible link--let alone early sign. Are you sure you didn't misunderstand him?

As to atrophy--that was my thinking--it's not normal for you to have brain atrophy--something has to be causing it. So, they did a thoracic MRI? Are the discs loosing height or drying out? What does the report say? (again, I always get copies of all my MRI reports)

I don't remember what else was in your brain MRI--but weren't there 4 lesions? He can't rule out MS based on one MRI with abnormalities. Not possible. Like ALS, MS progresses--but unlike ALS, MS symptoms can come and go--and has various types. It's still very possible that you're experiencing your first flare of the disease. Spasticity is one of the leading complaints people have with it, actually. Yes, there are things that MIGHT have shown up on the spinal tap more indicative of MS--but not always and not in early stages necessarily.

A few questions:

What exactly are the areas you've had MIRs of?
What bloodwork has he done?
What parts has he done an EMG/NCV of?
What is his specialty? (If it's not Dr. Vu, I know his specialty)
Did he give any indication of what could be causing brain atrophy?
Why is he doing a full body EMG/NCV?



Most of what I've read in your symptoms fit MS quite well. I'd specifically ask for Evoked Potential testing to be done.

Earlier you'd posted that he said it was unlikely you could have ALS based on your age--now he's saying that doesn't matter? It seems like your own doctor is giving conflicting information here. First MS was possible, but now he's ruled it out?

Honestly--I am supposed to go to Dr. Vu--if he's being this wishy-washy and completely changing what he says--i don't think I'm going to reconsider going to him. Or did all this latest update come from an Orlando area neuro?

Like other things--MDs often specialize in a specific area. Dr. Rosenberg is a MS specialist here in Orlando. Dr. Vu and Katsin are specialists in neuromuscular and motor neuron disorders.

Honestly--ALS is still likely NOT even a realistic possibility--but MS sounds VERY likely.

Remember, MS is almost as hard to diagnose as ALS. Too many variables. Lesions change and go away--new ones sprout. One of the types is "relapsing and remitting"-- comes and disappears. That would seem like a good place to start--as your testing seems to come and go as far as results.

Please see an MS specialist if you haven't done so. Read up on Dr. Rosenberg--he is supposed to be very good--I'm pretty sure, other than my doctors opinion--I read about him on the MS website.

I've never heard of a full-body EMG/NCV--sounds a lot more painful than I'd want to deal with.