Still working on ALS Clinic

[karla r]

I am really now unsure where to go from here. Have been trying to keep posts at a minimum, and here is why.
Had appointment with my primary doc. He said to keep my follow up with #2 neurologist. If he didn't send me on to the ALS clinic for eval, then go back to the 1st, and see if she can make her staff send me. If they don't, come back to him with copies of my various tests and the referrals she had written, and he will send me.
So I went to the follow up, and went ahead and appt with the 1st in case it didn't go well with the second. That appt is March 9.
So, #2 neuro did a quick exam, and said come back in 3 more months.
I asked him for more info on what was going on. Asked if he thought ALS was still prob the diagnosis. He said who told you that first. I told him dr Saad. I reminded him of all the tests I had brought him, the copies of the referrals she had made, and that I had came there to get them sent. Hsaid, "oh her." And actually rolled his eyes. Then he said no, it is not ALS. So I asked him why he had taken that out as a possibility. He said he did not see fasculations of my tongue. So, I reminded him that he and Dr Saad had noted them in both my legs, arms, and hands (ect). He said none in the tongue means you do not have ALS.
I did ask if not that then what are still possibilities. He said he thinks I am having a lot of small strokes caused by vasculitis. I did say that last time he had said no strokes because all 3 of the brain MRIs, and the ct scan were all clear, plus both the vascular tests he had ordered plus the muscle biopsy had showed no evidence of vasculitis, nor other vascular problems. He said they were symptomless strokes. So I asked what to do. He said you already take plavix, keep taking it. I said if I'm still having strokes, is it working and do we need to do something else. He said no, but in 3 months at the next follow up, we might try ivga ( I think is the correct letters he used) I did ask what it was, and he said it supresses your immune system from attacking your own body. I said I thought autoimmune disorders were ruled out by the tests you ran, and he said that it could be an autoimmune disease that is hiding from us.
So 1 said prob ALS, and referred me to ALS clinics for further eval, and this 1 said no ALS.
I thought I'd go light on posting until this is resolved, because he said no. I'm still going to work on the referrals, because I want to be sure.

 

[KimT]

Karla,
I'm so sorry you've been through so much. It took me over a year to get a diagnosis and I went to three ALS Clinics and one other neurologist.
Hang in there. I know how hard and stressful this can be.

 

[ShiftKicker]

Oh man. I am so, SO sorry you are having to deal with this. Regardless of this current neurologist's possible expertise, he has added to your burden by not providing actual care and having zero ability/willingness to help you or provide information.
If you have an appointment at an ALS clinic, keep your appointment. That's my completely uneducated recommendation. At the very least they can confirm this current neuro's assertion you don't have ALS.

~Fiona

 

[mpnatx]

Karla,
Was an EMG performed by these neurologists? Do you have weakness, brisk reflexes or atrophy?
A lack of Fasciculations in the tongue is not enough to rule out a diagnosis. Much more testing is needed do to rule out ALS. Or, to find find other issues that may be causing your symptoms. It's a lengthy process. Very frustrating!
Others here can elaborate more.
Hope you can get some answers,
Marty

 

[karla r]

Yes, several emgs and nerve conduction studies. Brisk reflexes, and muscle atrophy noted by both. Also have drop foot in both feet now. Started in right. Also have lost ability to stand up straight, stand from sitting, or sitting from laying down. Muscle biopsy surgeon noted severe loss of muscles also.

 

[lgelb]

I would run, not walk away from neuro #2. As Marty notes, absence of tongue fascics is not diagnostic. This guy is on his own planet.

More seriously, vasculitis is an umbrella term for many disorders, some of which are autoimmune. Some attack the CNS yes, and some can cause strokes because of bleeding in the brain, but this is a very serious development and isn't something you throw Plavix(!) and a three-month followup at.

Even non-CNS versions of vasculitis are treated by rheumatologists with various immunosuppressive drugs (which, depending on the form, may include IVIg). If there is any possibility that vasculitis is what you have, you need to be under much more timely and targeted care. But first, you need an actual definitive diagnosis.

Please get a referral to a university neurology clinic (MUSC?). The gap between ALS and vasculitis is a wide one and not one to fall into.

Best,
Laurie

 

[gooseberry]

#2. Sounds like a real quack

 

[Nuts]

What an aweful mess. Please listen to Laurie, and stay as far away from Neuro #2 as you can.

And don't feel you need to stay away from us in the meantime. Your frustrations with getting a diagnosis for a very scarey condition does not put you in the category of those chasing an ALS diagnosis.

Big hugs. I wish I could do more...

Becky

 

[pittsburghgal]

Karla,

I am so sorry for what you are going through. I really think you need to never return to neurologist#2. Tongue fasiculations do not need to be present to diagnose ALS. My PALS did not develop tongue fasiculations until late ( many years after he first had symptoms of hand weakness).

MRI scans are very sensitive for the detection of strokes. If you had negative MRI scans, there was no stroke.

Sharon

 

[KimT]

Laurie gave you the best advice. We're all here for you.....meanwhile, please consider doing what she advised.

 

[karla r]

Laurie, vasculitis as well as autoimmune disorders were already ruled out, by blood work, muscle biopsy, and vein studies. Most of my family also feel I should not go back to #2. And I won't. Appointment with #1 is March 9th. If her staff still will not send those referrals, my family doctor will. And I've been on plavix since September 2013, when I first had foot drop, even though my MRI at that time did not show damage due to a stroke. I had been on asprin before that. They stepped it up to plavix. #2 didn't even suggest a change in dose.
Thanks, all of you.
Even though I knew immediately there were a lot of problems with what he said, the words "it's not ALS" gave me pause. I so want those words. "It's not, and we can treat this." For a few, I really wanted to push all the doubts and concerns out of my mind, and just go with those words.

 

[lgelb]

You may still get the words you want, Karla, but I really would head to MUSC or another academic center if you can. As you say, your PCP can get it done if neuro#1's staff can't function; honestly, since you're going back, I'd sit on the table until you have a referral in the computer and a complete medical record in your hands, which would be quite justifiable.

What do the EMG reports actually say in the notes? I'm at a loss as to why/how you aren't diagnosed from what you've posted.

 

[djbailey]

We went to the MUSC clinic because it is 15 minutes from our house. At the beginning when we could travel we went to Mayo. At the current stage we are in, clinic visits are just to hard for my PALS to attend. If I was going for a confirmation of Diagnosis in this area I would head to Mayo (Jacksonville), Georgia Regents University Augusta, Duke University ALS Center or Department of Neurology, Carolina Medical Center Charlotte, NC. There is a reason that that MUSC is not a center of excellence on the ALSA.org web site.

 

[karla r]

IEMG reports both chronic and active denervation. MRIs and other tests show no autoimmune disorders, no Lyme's, lupus, no lesions, no compression or spinal discs causing problems with my spine. Also, mg and Ms were ruled out. I have a little chf, but not enough to cause any major problems. No muscular disorders noted with the muscle biopsy either. So, this is why #1 neurologist said I have a MND, probably ALS, and wrote out the 2 referrals for the 2 closest ALS clinic her staff never sent.

 

[lgelb]

Actually, DJ, ALSA only "certifies" about half the "centers of excellence," with MDA taking the other half, places like Hopkins. And some fairly decent places are certified by neither.

But if MUSC is not up to it, by all means, Karla, look into Charlotte et.al. (not sure how far you are willing to travel/your insurance network).

Thanks for sharing, DJ. I want to encourage anyone who wants to recommend/warn people off a particular clinic to do so. We are all here to benefit from others' experiences.

Best,
Laurie