Awaiting Diagnosis

[prometheus]

I think I may be having some communication issues with my neurologist and I am hoping for some ideas on how to communicate with him. I am also hoping to see what your thoughts are on my symptoms. I may need to seek a new neuro.

My symptoms started in mid October as weakness and spasticity. I saw a MD and by the end of October I had my first neurology appointment. At my first appointment, my MD said that it was possibly MS. He also mentioned PLS and possibly ALS (only upper motor neuron signs so far). In addition to my symptoms, my MD documented that I had a very slight essential tremor and numbness in my right arm. However, these were shown to be unrelated through a series of tests.

The tremor only manifests itself if I've had coffee or if I've been lifting with my arm. The "tremor" was in my weak arm. This makes me think that it is not an essential tremor, but that it is related to my caffeine consumption or weakness. If I do not drink coffee in the morning and am careful to only lift my kids with my strong arm, the tremor is non-existent at my neuro appointment.

The numbness in my arm is another symptom that I think may be unrelated. After my spinal MRI, my neurologist said that I had some thinning on a vertebrae on my spine, and that it would cause numbness in my arm.

At first he was thinking MS or something to do with the motor neuron, specifically upper motor neuron. In addition to my weakness, spasticity and poor balance, I also had a positive Babinski and positive Romberg sign. However, since the MRI and LP came back normal, he said that he has ruled out MS (I think a bit hasty but I’m not the expert). He said that he didn’t know what was going on because my symptoms were coming and going. However, the only one that was “coming and going” was the tremor, and this was dependant on whether I had caffeine or overworked my weak arm. My spasticity, weakness and balance have not disappeared and have only become worse in the four months since my onset. I am now to the point where I cannot walk without assistance and am having painful leg and back spasms.

At my last appointment, he said that he is ruling out MNDs because of the way that the tremor comes and goes, and because tremors and numbness are not signs of MND. Don’t get me wrong, I don’t want it to be ALS or PLS, but if it is I want to know. So now he is saying it may be early Parkinson’s because PD won’t show up on the MRI and LP. He also said that his money is on it being something called multiple system atrophy because it would be Parkinson’s plus whatever is causing the babinksi, Romberg and numbness.

I don’t want to be argumentative with him, but he doesn’t seem to be listening when I remind him of the thinning vertebrae causing the numbness (his very own words) and the tremor being related to caffeine and/or weakness.

Any thoughts? Suggestions? Could this fit into the MND disease category? How should I approach my neurologist with my concerns?

[crystalkk]

hi,

Get a 2nd opionion if you are not happy.
It is very hard to find a dr that will sit and totally listen to what you are saying.
Nuerological things do take along time to dx it could take a year or two or even longer.
Did you get an emg yet ? How are your reflexes?

[prometheus]

Thanks crystalkk,

Is an EMG the same as the nerve conduction test? I had a nerve conduction test and it was normal. I don't remember what he called that one. For all I know it may not be ALS at all, but it does seem to originate in the upper motor neurons based on what I've read about all my symptoms. Thanks for the reply!

[olly]

i was suspected of having ms ,but mri's were normal. you should have a series of mri's 6mths apart as sometimes in early stages the lesions can disapear if minor.
as for the tremor, it could be due to clonus. i have this in legs if i'm sat down and lift my heal of the floor my leg goes beserk, also in my arms when i say answer the phone,it seems to be when my limb joints are at a bent angle.
i would see another neuro, i had a neuro who was an imbocile lol, you know your body.
as for msa it would show on mri there would be definate atrophy in cerebelum/pons.
hope this helps, best wishes
caroline:-D

[hopingforcure]

Sounds like clonus to me also, you describe it just as I would. I also have it in my jaw. It is because the relexes are brisk to a pathological level. zanaflex helps with the spasicity and clonus that go with this thing.

[prometheus]

There's a lot of good info here. So what exatly is clonus. He has never mentioned that word to me.

[hopingforcure]

It is the result of pathologically brisk reflexes. The doctor often looks for it by tapping your ankle in a certain manner, if you have clonus your ankle will continue to beat or move on it's own. If it sustained clonus the beats will keep going. If it unsustained it will be 5 beats or less. Some healthy people, mainly thin women I believe, can have clonus , without being ill, but with other symptoms and such, it is upper motor neuron involvement caused. Hope that helps explain clonus....Hoping

[crystalkk]

promthesus,

An emg is where they stick tiny needles in your muscles. The nerve conduction is the test where they give you little electric like shocks.

[prometheus]

Thanks for the clonus definition. It makes sense. On the EMG results, he wrote down
"patient has no signs of denervation".

[olly]

the neuro is putting too much emphesis on the tremor,which i suspect is clonus, put this aside and ask what else causes umn signs/symptoms. my uncle has parkinson and the tremor is so obvious, as it would be in ms,ataxia etc. i mixed up the clonus as being a tremor,but as you say it comes and goes,keep a check of when it happens say when you have something in your hand and arm is bent.
are you on meds? baclofen will help with spasms,stiffness,clonus.
please go to another neuro, but don't expect a dx so soon as umn desease like pls can take yrs to dx, as long as your believed,getting treatment,help,thats all that matters for now a dx will come sooner or later, i totally understand iv'e been there.
best wishes
caroline:-D

[prometheus]

Thanks olly,

As of right now, he put me on Requip and said that if it is in the PD family I should get some relief. However, it's been six weeks and the stiffness is just the same if not worse. The only thing that the dopamine is doing is making me very tired and irritable. At this point I don't care too much about a dx if they can simply ease the pain and ease the stiffness.

This is a side topic, but I'm generally not a very emotional guy and I'm overwhelemed by this community and how there are so many people here who just get it. Maybe because, regardless of what disease we all have, we are all in the same boat to some degree. I have a lot of very good friends who are concerned, but I feel like I am letting them down by not being able to give a good answer when they ask what is going on. There is something very special in this community. I dig it.

[hopingforcure]

that is a good sign on the emg results. They tried requip on me at the beginning of this journey, made me tired and irriarable also. We are all in this together, glad you feel welcome, because you are. Hoping

[olly]

prometheus
they wait 3-5 yrs to dx pls to check no lmn signs/symptoms develop, so you may have to be patient and wait. i too did not know what to tell people and i suspect some thought it was all in my head,but its hard for people to understand when you tell them the neuro does not know whats wrong. my doc said my neuro won't dx me pls/als yet as 18mths ago they found iv'e developed lmn signs/symptoms and are not sure. but i go to mnd clinic on 20th march and i'm having a emg.but past year i have suddenly started to deteriorate and i am getting weaker ,plus iv'e started with eating/swallowing problems and wieght loss. i would find another neuro you feel comfortable with and who will listen to you. if you go to pls forum there are some web sights and info in my posts.
hoping
i got your message, sorry i can't seem to place you, i speak to so many i get confused lol i 'll try to find your posts to compare and get back to you.
best wishes to you both
caroline:-D

[olly]

sorry you'll have to remind me about yourself, i can't find a post with your symptoms etc.
im so sorry ,sometimes i have to write things down as i forget who's who and what's what lol .i'm sure demensia is setting in now.
caroline:-D

[prometheus]

Thanks again Olly. I'll check out the pls forum

[juliesmile]

Prometheus,

what's the Romberg sign and what does a positive test mean.

[CindyM]

I just looked it up. It is a test similar to the one they give for people suspected of driving while under the influence. Basically, you try to walk a straight line with your eyes closed. Google says a positive Romberg sign could indicate CIPD or one of the Peripheral neuropathies.

[prometheus]

I may have used the wrong term. The test I'm thinking of is when I stand up straight and close my eyes. I am unable to maintain my balance with my eyes closed as opposed to being able to with them open. As soon as I close my eyes I start to sway and then fall down. I think it is also administered by the police. Maybe I used the wrong term?

[olly]

that is correct, but in pls balance is impaired, and the motor pathways run through the cerebellum so a umn lesion there will cause balance problems. i too failed that test.
but also if in mnd you have difficulty walking with eyes open it's obvious you can't with them shut!!!!!!!.:neutral:

[olly]

sorry i was talking about walking one the other standing still is to test for ataxia also a cerebellum area.

[olly]

Romberg Test
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Ask the patient to stand with their feet together (touching each other). Then ask the patient to close their eyes. Remain close at hand in case the patient begins to sway or fall.

67. Romberg Test



What is Being Tested?

With the eyes open, three sensory systems provide input to the cerebellum to maintain truncal stability. These are vision, proprioception, and vestibular sense. If there is a mild lesion in the vestibular or proprioception systems, the patient is usually able to compensate with the eyes open. When the patient closes their eyes, however, visual input is removed and instability can be brought out. If there is a more severe proprioceptive or vestibular lesion, or if there is a midline cerebellar lesion causing truncal instability, the patient will be unable to maintain this position even with their eyes open. Note that instability can also be seen with lesions in other parts of the nervous system such as the upper or lower motor neurons or the basal ganglia, so these should be tested for separately in other parts of the exam.

[prometheus]

I'm not too keen on anatomy, but it sounds like this sign would not be typical of ALS right? Maybe this is why the MD is thinking Multiple System Atrophy?

[olly]

if you look it says it can be caused by umn/lmn lesion.
those with predominatly umn symptoms usually have a balance problem, ido so does geo and many others .
by the way when i asked if you were looney i was only joking, just my british dry sence of humour lol.:-D

[prometheus]

I didn't see that but it makes sense. Don't worry about the humor.. mine is dry too. :)