Neurologist thinks I may have ALS

[dragonlibra]

And I'm wondering hoping he is missing something in cervical region. I am going to consult a neurosurgeon. Neurologist is ALS specialist.

Background:
Nov 2010 had dizziness & equilibrium problems. Felt foggy. PCP does a hurry up diagnosis of BPPV. Prescribes anti-nauseas med. Did notice sore neck trying to sleep. I think it may have started earlier than dizziness.

Dec - Felt like crap most of month including chills one night but dizziness & space cadet feeling. Neck still sore sleeping.

Jan - started getting pain between my shoulders, numbness, tingling, stiff, pain felt hot. Would build up during day. Relieved by sleeping then start cycle over next day.

Feb-Mar - Noticed weakness finger/grip strength right hand, PCP sends me to neurosurgeon. Brain scan ordered. Negative. PCP also orders MRI cervical. (Post results later here). Sent to neurologist.

April - Neurologist thinks MS - MRI with contrast - no markers indicative of MS in either brain or cervical MRI. RX Neurontin which does squat for the pain. Prescribes PT which helps some but therapists don't quite know what to do w/o firm diagnosis.

May - legs start to become unsteady. Fall a couple of times. EMG done on arm. I don't know result. Need to ask.

July - Neurologist scared crap out of me by mentioning motor neuron disease. Wants me to see another neurologist(he did EMG on me) ASAP which translates to 7 weeks later.

My lost summer symptoms grow worse. Right hand function almost gone. Left hand getting weak. Muscle atrophy hands/arms. Walk like a drunken sailor. At night I use a cane. Scared of stairs. Have some tremors thumb and index finger at times. Sometimes in arms, butt and quads especially if pressure on back/arms/thighs like in bed. In pain between shoulders, just below neck and now neck every damn day! Hands numb and tingling every morning. Dressing especially bras, buttons, zippers near impossible & I live alone. Trying to stay working. Also some bladder & bowel incontience problems.

Now. Finally saw neurologist again. Thinks like I do problem in cervical region. Another MRI with contrast. Calls, says I have issues in C5-T1 but not enough for my symptoms. I don't have results of latest but neurologist said they did change. First 2 MRI's showed.

C5-C6: There is diffuse disc bulge resulting in ventral flattening of the thecal sac. Facet arthropathy results in mild neural foraminal narrowing, left greater than right.
MRI 2 - There is diffuse disc osteophyte complex resulting in effacement of ventral subarachnoid space and narrowing of left neural foramen.

C6-C7: Left paracentral left lateral herniation leads to narrowing of the left neural foramen. 2nd MRI There is diffuse disc osteophyte complex resulting in effacement of ventral subarachnoid space and narrowing of left neural foramen.

C7-T1: A mild disc bulge results in the ventral flattening and neural foraminal narrowing. 2nd MRI There is diffuse disc osteophyte complex resulting in effacement of ventral subarachnoid space. Neural foramina are patent.

Also - signal abnormality within the left T1 and left C7 vertebrae is consistent with hemangioma. There is loss of disc height and T2 signal throughout cervical intervertebral discs consistent with degenerative disc disease. There is diffuse loss of the expected intervertebral disc signal, however intervertebral disc space height maintained.

Sorry for the long post. In pain & I need to vent. I know medical advice can't be given here but I'd love to hear from those of you who have gone or going through this hell.

BTW I'm female, near 59, in relatively good health till now, a bit overweight but was physically active till now. Heck I did 27 years of martial arts and now I can't open a bottle or snack bag without an aid.

I live alone. No close relatives. No caretaker. Neurologist asked if he should make inquiries into assisted living.

I'm still trying to work. Would love info on applying for SSI.

I'm scared & depressed at the moment!

What should I ask about EMG results? He has ordered a leg EMG.

After this is done I am going to order a copy of my test results.

Any ALS clinics anyone recommend in PA/OH for a 2nd opinion?

 

[Lobster]

University of Pittsburgh ALS Clinic
Department of Neurology Suite 810.
Kaufmann Building
3471 Fifth Ave.
Pittsburgh, PA 15213
(412) 692-4920

I hope you don't have ALS. Get your second opinion as soon as possible so you can either plan appropriately or put your fears to rest.

I am sorry you're going through this.

This website has much to offer. Read all you can.

 

[dragonlibra]

I guess good place to start would be UPMC ALS for 2nd opinion while Highmark still covers? I am from Pittsburgh and am going through AGH.

Thanks for reply.

 

[dragonlibra]

Oops should've said latest MRI did not change from 2nd MRI April. Newbie here though I have lurked throughout summer. Didn't see any way of editing my OP.

 

[Lobster]

From the ALS Association website:

The ALS Association Western Pennsylvania Chapter

Pennsylvania ALS Clinics

Allegheny General Hospital ALS Clinic
420 E. North Ave
Suite 206
Pittsburgh, PA 15212
Medical Director: Sandeep Rana, MD
412-359-8644

University of Pittsburgh ALS Clinic
Department of Neurology
Suite 810
Kaufmann Building
3471 Fifth Ave.
Pittsburgh, PA 15213
412-692-4920
Director: David Lacomis MD

John P. Murtha Neuroscience and Pain Institute
Conemaugh Memorial Medical Center 1450 Scalp Avenue, Suite 120
Johnstown, PA 15904
Medical Director: Jeremy Meisel, MD
Office Coordinator: Danielle Rapsky [email protected]
814-269-5061

The Neuromuscular and ALS Center for
Comprehensive Care at Lehigh Valley Hospital
Lehigh Neurology
1210 S. Cedar Crest Blvd.
Allentown, PA 18103
Medical Director: Glenn Mackin
610-402-8420

The ALS Clinic at Geisinger Medical Center
Dept of Neurology
100 North Academy Ave
Danville, PA 17822-1405
Scott M. Friedenberg, MD,Medical Director
570-271-6472
570-271-6590

 

[trfogey]

dragonlibra,

It sounds like whatever is going on with you is a bit confusing for your doctors, which is why they are jumping from diagnosis to diagnosis at the moment. Try not to be discouraged by this -- it happens sometimes, especially in situations where spinal injury (e.g. disc problems) are potentially in the mix. Patience is your best friend here.

Easier said than done, I know, but adding more doctors to the mix can complicate the diagnostic situation further, so I would recommend against seeing a neurosurgeon unless one of your neuros refers you to one. You mentioned a seven-week wait (starting sometime in July) for a second neurological consultation. That seven weeks and the consultation should be coming up very shortly. Why not wait until that consultation and see if the picture gets any clearer?

 

[dragonlibra]

I already had the consultation - 7 week wait over. Only took him 5 days to sched after got latest MRI results which he said showed no change. Called my neck/shoulder pain arthritis and jumped right on ALS diagnosis. He said ok to see neurosurgeon since I'm not convinced ALS. Neurologist already asking if his office should look in to assisted living for me.

Seemed a bit quick to me after only 1 EMG of arm end of May and what seemed to me a cursory exam of reflexes previous visit and notes from partner doc whose exams also seemed a bit cursory. Had all the blood tests though.

 

[trfogey]

I already had the consultation - 7 week wait over. Only took him 5 days to sched after got latest MRI results which he said showed no change. Called my neck/shoulder pain arthritis and jumped right on ALS diagnosis. He said ok to see neurosurgeon since I'm not convinced ALS. Neurologist already asking if his office should look in to assisted living for me.

It's not clear from what you have written here what each of your two neurologists have said or done, which makes it difficult to determine whether you are getting appropriate testing and/or treatment. Perhaps you could be a bit more specific -- which neuro said what, when he/she said it, what tests he/she ordered and what the results of those tests were, etc.

Seemed a bit quick to me after only 1 EMG of arm end of May and what seemed to me a cursory exam of reflexes previous visit and notes from partner doc whose exams also seemed a bit cursory. Had all the blood tests though.

ALS can be diagnosed from a single EMG, but more extensive EMG work would have been appropriate at that time if the characteristic lower motor neuron problems had been seen in your arm during the May exam. Who performed the actual needle EMG -- one of your two neurologists or a technician?

As I said above, your story is a bit confusing, but I'd agree that jumping to an ALS diagnosis seems a bit unusual, given what you've described. Perhaps you should corner the first neuro and get him to lay out piece by piece and step by step what led him to be concerned about MND -- what he saw on the raw EMG data, what he found when he did the clinical neurological exam, does he see symptoms of both lower and upper motor neuron damage and specifically what those symptoms are and where they are, etc.

 

[dragonlibra]

It's not clear from what you have written here what each of your two neurologists have said or done, which makes it difficult to determine whether you are getting appropriate testing and/or treatment. Perhaps you could be a bit more specific -- which neuro said what, when he/she said it, what tests he/she ordered and what the results of those tests were, etc.

ALS can be diagnosed from a single EMG, but more extensive EMG work would have been appropriate at that time if the characteristic lower motor neuron problems had been seen in your arm during the May exam. Who performed the actual needle EMG -- one of your two neurologists or a technician?

As I said above, your story is a bit confusing, but I'd agree that jumping to an ALS diagnosis seems a bit unusual, given what you've described. Perhaps you should corner the first neuro and get him to lay out piece by piece and step by step what led him to be concerned about MND -- what he saw on the raw EMG data, what he found when he did the clinical neurological exam, does he see symptoms of both lower and upper motor neuron damage and specifically what those symptoms are and where they are, etc.

Saw 1st neurologist May - when I first saw him April he jumped on MS though no markers in brain scan. In April he ordered Cervical EMG contrast. Also a ton of blood tests. No MS markers & seemed to think though some issues C5-T1 not causing my symptoms. He ordered EMG of weak/atrophied arm which was done end of May by 2nd neurologist training a resident. I saw he knew his stuff & tried to pump him for info. Wish I could have interpreted what he was telling resident. He did indicate to me maybe trapped nerve.

July appt with 1st neurologist - no he did not call with results. Meanwhile arm got more useless & left arm starting to weaken May-July. Also now walking like a drunken sailor. Stairs a problem because of balance. Fell a couple of times. Right foot seems to slap when I walk. Did a few strength & reflex & walk tests. Wants me to see 2nd neurologist ASAP at end mentioning "don't want to freak you out but may be motor neuron disease". Gee thanks.

7 weeks to get that ASAP appt. 2nd neurologist end of Aug. Did a couple of strength & reflex tests. Because of really bad daily pain in upper back just below neck & now into neck he thinks that is problem. MRI with contrast ordered. Says shows no changes though as I posted there are some issues C5-T1. Dismisses cervical/neck pain as arthritis & throws out ALS as probable diagnosis today. Even gets in to assisted living talk.

BTW 2nd neurologist runs one of ALS clinics Pittsburgh.

EMG of legs ordered. That is end of Sept. Meanwhile I am going to see a neurosurgeon this week.

Any typos blame hand & a quarter hand.

 

[KissJ]

Everyone is different! And, I've learned the hard way that diagnosis is difficult...not just with ALS, but MS...and the list goes on. I'm an example of being misdiagnosed with MS! I thought I had it for seven years! I'm here for my husband, so enough about me! And, it is amazing to me that now I am dealing with ALS with him! Life isn't fair! But, keep pluggin away, asking questions, and praying. You are going to experts! And, I can tell you for a 2nd opinion, my husband goes to the ALS/MD Clinic in Oakland/Pittsburgh at the Kaufmann Building, UPMC, as listed above by Lobster (Thanks Lobster!). Dr. Lacomis is excellent. My husband and I feel very comfortable with him. He has an all day appointment coming up on the 23rd. We meet the "team"
for a complete exam/review... I can let you know then how it goes. God Bless you! You have my prayers!

 

[trfogey]

So both neuros have listed ALS/MND as a possible, if not probable diagnosis? I'm sorry to hear that. Maybe you can get the ALS specialist to lay the evidence for the diagnosis out for you once the EMG of your legs has been performed.

Good luck to you. Hopefully, further testing will turn up another cause for you.

 

[dragonlibra]

Yes. But based on 1 arm EMG plus some symptoms? I feel like the cervical pain which preceded the hand & other symptoms is being ignored. Plus the feeling like I had flu which preceded the cervical problems by a month.

 

[trfogey]

Yes. But based on 1 arm EMG plus some symptoms? I feel like the cervical pain which preceded the hand & other symptoms is being ignored. Plus the feeling like I had flu which preceded the cervical problems by a month.

If they can account for the other problems -- such as the sensory problems (tingling and numbness), the pain, and the dizziness that you mentioned early on -- with other causes, a MND diagnosis is possible. Don't make the mistake of thinking that because two symptoms appear in your life at nearly the same time, they must be caused by the same medical problem. Usually they are, but not always.

Next, I cannot emphasize strongly enough how important that it is for you to pin either or both of your neuros down and get them to explain to you in depth how they've arrived at the conclusion they've reached and what their followup plan is. Obviously, you've read enough here to realize that getting an ALS/MND diagnosis based on the examinations and testing you've had to date is unusual. And, quite frankly, short-circuiting the diagnostic process like they are doing should mean that your symptoms are profound enough to be easily demonstrated, even to a layperson.

Make them do that. It's what you and your insurance company have already paid for: their expert opinions and the reasons for those opinions. Don't let them brush you off. You need that information, not only to take into account while making your plans for the immediate future, but also for your own peace of mind about that future.

Yes, things do look a bit grim at the moment. However, it's not final until there are no other alternatives. We've had other folks come here with a "possible/probable" ALS/MND diagnosis that turned out to be something else that was treatable. Let's hope and pray that you are the next one.

Good luck and keep fighting.

 

[dragonlibra]

Thanks for the info/advice. 2 weeks ago neuro 2 was leaning towards neck. Then MRI came back same as one in April. I will pin 2nd neuro down after leg EMG in 2 weeks.

 

[notme]

HI

Definitely take trfogey's advice and make them give you answers. Specifically:

1. What did you see in the EMG that leads you to suspect ALS?
2. What about the 'trapped nerve' you mentioned? Was this found in the NCV? (note: I'm here to tell you that a trapped nerve can apparently cause severe atrophy and loss of function--as I've lost the use of 90% of my left (dominant) hand and starting in the right--from trapped nerves according to the NCV)
3. What are other possible differentials?
4. Why are you suggesting assisted living without a diagnosis?

You do need answers. I'd suggest taking a friend with you to your next appt--or a list of questions. The EMG can show MND -- but other things can mimic the findings, I believe.

My MRI results on the C-spine are very similar to yours. I've got several ruptured discs, discs impinging on my spinal cord, etc. A competent neurosurgeon can read those films and make a determination--but per my ALS specialist here, I was told to have NO surgeries until ALS had been ruled out completely.

Two neurologists and a neurosurgeon suspected I had ALS--but now they are at a loss as things aren't adding up properly.

I always make it a point of getting copies of all my reports--you might want to do that as well.

MND isn't usually mentioned unless other things are ruled out first--in my case it was the severe atrophy that led them to suspect ALS--and my abnormal clinical exam.

But--you have a lot of issues that could be other things--for instance, ALS doesn't cause bladder and bowel issues normally.

I think I'd get my records then contact the ALSA in your area for more information as to who to see--or some of those already suggested in this thread.

I do wish you the best and hope you get any answer OTHER than ALS.