Waiting for appointment

[BreeBree]

I am nervously awaiting my next EMG with my neuro. Every day feels like an eternity. I really want to hear that it's not ALS, but we've ruled so many other things out. MRI's of spine & brain are clear, blood work is clear -- we keep ruling things out.

My EMG for my right leg was abnormal last Spring & I was told the muscles were shriveling, but we assumed it all must've been due to lumbar radiculopathy. By summer part of my right leg was visibly shrunken (atrophied) even though I was getting in more walking & exercises that were supposed to build strength. But all the imaging showed no possible cause.

We also ruled out a metabolic/endocrine disorder, cancers, infections, MS, Guillan Barre, recurrence of Chiari (surgically corrected years ago).

Everything but the EMG was fine, and yet in spite of initially making some progress in PT with fall prevention, I've since gotten worse than ever. Since December, my arms -- especially my right arm -- are weaker. My latest neuro exam showed "pronator drift" when my neuro tried to get me to hold my arms out in front of me. He now wants to do an EMG of my arms.

The one thing that gives me hope that it's not ALS is that I sometimes get a lot of pain for a few seconds when my muscles spasm -- especially in my foot. Fortunately, it goes away when the spasm stops. I keep reading that people in early stages of ALS don't ever have pain.

I'm worried for nothing, right?

Thank you in advance for any replies. I'm so sorry for everything people with ALS go through. It sounds so scary.

 

[Nikki J]

Hi
I know waiting is hard. When is the appointment?

Cramps do happen early on in ALS. And yes they hurt. You are right to be concerned I think but there are likely other things it could be in spite of all your tests. The list of rule outs is incredibly long.

What is your neurologist saying?
Do let us know.

Sorry I can't say absolutely no way but don't give up hope!

 

[Bestfriends14]

Hi Bree,

I second what Nikki says. My husband did get cramps in his left foot initially, but I think it was because he was trying to force it to do what it could no longer do, which was take proper heel to toe steps. Do you have any drop foot in the right foot?

Waiting is long and stressful but do try your best to keep busy; the time will pass. Hopefully the wait is not too long.

Will your appointment be with an ALS specialist?

Keep positive during this time.

 

[BreeBree]

Thank you both for your replies!

My EMG isn't until the 30th. My neuro said I could probably get into someone else sooner, but I trust him since he worked at Mayo for such a long time; so I am really trying to calmly wait. He is not an ALS specialist so I would definitely want to get a second opinion with one of his colleagues at the ALS Clinic should that be his opinion after the EMG.

I have foot drop in both feet -- worse in the right. The physiatrist & physical therapists couldn't agree on whether I should get the brace for foot drop or not, or even whether I should continue using the 3-point cane that the ER recommended after a particularly bad fall, or should switch to a standard cane. Their disagreements drive me crazy. The place where I go is supposed to be the #1 rehab hospital in the country, so I know I shouldn't complain, but it's frustrating.

The PT had me switch to a marching-type walk to avoid tripping, but my thigh muscles are getting weaker & I'm struggling now to even do that. The OT at the hospital this last time had to suggest new equipment for my bathroom so I can get myself up off the toilet; and I need to get a shower bench since I can't stand for long & my arms are now almost too weak to get out of the tub even with multiple attempts. I'm grateful that I live in a major city where there is such great medical care -- I just wish I didn't need it.

My neuro isn't saying anything -- which isn't like him. He just said we'd talk after he does the EMG. I've been with him since my Chairi surgery 15 years ago. I've never seen him nervous about anything. He's usually (weirdly) excited to rattle off all the bizarre, horrible & super rare possible diagnoses something could be ... and loves recounting the goriest details of cases he saw when he was at Mayo. Used to cause me nightmares for weeks after any appointments -- but I never worried I had any of those things. This time he started out his usual cheerful, eccentric self, but became strangely quiet after the neuro exam. Maybe it was nothing, but it's had me worried.

I wasn't sure what "pronator drift" was, so I looked it up. Then combined that with weakness & atrophy in my leg & ALS came up. I always try to look for ways to contradict what's out on the internet, but I'm not doing so well this time.

Hopefully, you're right & it's just some even rarer condition that they will find with the new EMG. I left out a lot of the mundane stuff we ruled out as far as neuro conditions, but I'm sure you're right that there are plenty of possibilities still out there.

I really appreciate you both taking the time to write me an answer. Thank you, truly.

 

[Vincent]

Welcome to the end of medicine where you get blank stares. The majority of physicians have a case load of 2,000 patients. The odds of having ALS are about 1/50,000. This means the majority of doctors have a 1/25 chance of having 1 patient with ALS. This is also the disease which must not be named. So you find yourself in limbo. This really sucks, but at the same time no one has diagnosed you with ALS. I used to think of it as I'm sitting at 3 and 2, but I'm still fouling them back. As long as you are still fouling them back there's still hope. Look at my picture and the analogy will make sense. Go Blue Jays!
Vincent

 

[BreeBree]

Thanks, Vincent. I do know the statistics and, to some degree, they are reassuring. But ever since I had 3 extremely rare infections simultaneously (1 of them had only 12 documented cases anywhere in the literature; and the others have odds around 1/500M), I don't take as much comfort in numbers. It took 8 years to get that diagnosis & then they had to keep repeating the biopsies because they were convinced somebody made a mistake. The odds of any one were minuscule; the odds of all three at once were astronomically small.

You're right, of course, that I need to not let this worry get to me. I don't know why it is. I'm usually the last person to worry before I get an affirmative diagnosis. We'll just all keep hoping for another ball until I hear differently. Thanks for the encouragement.

Go Blue Jays (and Cubs!!!)!

 

[lgelb]

If the canes are not working, it's time for a rollator, Bree. Falls are not good. Same thing for the tub/shower -- get what you need. RIC is a great place, but no one knows or can predict it all. You will find, as I'm sure you have with the Chiari, that you have to be your own best advocate in whatever the next chapter holds.

Best,
Laurie

 

[Nikki J]

As Laurie says do whatever you have to to avoid falling! And do/ get whatever you can to preserve energy.

Clearly you have something major going on and 3 weeks surely seems forever. Keep yourself safe above all!

Are you working for pay? Do you have to go out? Be extra careful as I suspect you are dealing with snow and ice as we are here.

It is wonderful you have a neuro you trust. Did you get his opinion on the foot drop braces?

Let us know if we can help with any advice

 

[Bestfriends14]

Braces have helped my husband immensely and have kept him from the falls he used to have. They pick up the drop foot and aid in walking. A rollator will be of benefit to you, as well, as it will steady you much more than a cane.

Please keep us posted as to how things go.

Thinking of you during this time.

J

 

[BreeBree]

Thanks, Nikki, Laurie & J. I have been using my cane more in the last 3 weeks. Fortunately, my employer is very supportive. I work 18 hours a week & have a very flexible schedule. My workplace is fully accessible & I have wonderfully supportive colleagues. I love being able to work -- it gives purpose to my days -- but it's increasingly becoming physically exhausting to get there. A year ago, when I started, I was walking roughly 9,000 steps a day, with energy left over (but still some stumbles & falls). Nowadays, I feel like I've completed a marathon if I hit the 2,000-step mark. It's very frustrating!

For now, the 3-point cane is sufficient to prevent falls ... when I use it. I need to be better about using it when I'm just walking 6-8' because that's now when most of my falls are happening. If/when I need a rollator, I will not hesitate to get one. It's a new year, so I am going to try working with my former (local) PT -- I can also ask her about the brace. I'm hoping against hope that maybe the PT's at AbilityLab/RIC just weren't a good fit for me & that's why I continued to decline while there. I know that's not likely, but we keep trying until there's nothing left to try, right?

I am waitlisted in case there are any cancellations before the 30th for the EMG. I will come back to let you all know what they find. Thank you, all, for your kindness & support.

Nikki -- yes, it's cold & icy here, but nothing like the brutal storm you all got in Boston last week. Sending warm wishes to all those battling so much snow.

 

[Nikki J]

IF this is ALS it is super important to conserve energy. Are there other ways to get to work than whatever you are currently doing? Public transit can be very tiring to navigate. Can you uber part of the journey at least? Can you tweak your hours to avoid peak travel hours?

PT is a thorny issue. You can find discussions about this here. Most PTs are clueless about ALS and since you don't have a diagnosis it won't be on their radar to try to learn. A lot of us here have encountered PTs who think PALS can strengthen dying muscles and will push you. That works for a lot of issues but not ALS. It can hurt PALS. My clinic ( Mass General) says if you take more than one hour to return fully to baseline an activity was too much.

Concentrate on keeping safe, conserving energy and finding alternate ways to do things. The last can make a surprising difference.

Hope you get a cancellation spot! Is there any benefit to calling in and checking as well as being on the list? I once got a spot for a different kind of doctor by asking mid morning and being able to take an afternoon slot that had just opened.

 

[BreeBree]

Thanks, Nikki. I'll keep all that in mind.

 

[BreeBree]

Well, another abnormal EMG, but still no answers. Neurologist is referring me to Mayo. He said he's never seen anything like this in his 30 years of doing EMG's. All he could say is that there are clearly lesions somewhere on my nerves since "you can't fake an EMG" and something about Complex Repetitive Discharge in both arms. Still, my neurologist seems competent enough that I'm sure he would have been able to diagnose ALS. So ... my hunt for answers continues.

Thank you all for the kindness & support you have shown me. My thoughts & prayers are with all of you as you continue on your own journeys. May your kindnesses be repaid to you 100-fold, and may you find a measure of peace & moments of joy even in the midst of the valley of the shadow of death.

Blessings,
Bree

 

[Bestfriends14]

Hi Bree,

I'm so sorry you were only given vague (sort of) answers at your appointment today. Please come back and let us know how your next appointment goes and if you've been given more concrete answers.

All the best to you, Bree. I will keep my fingers crossed that the answers you receive to whatever is going on will be soon and will be something fixable.

Take good care, Bree.

J

 

[ShiftKicker]

Bree, that's really unfortunate there were no clear answers today for you. While I am sure it's nice to be special, stumping an experienced doctor is not something to aim for.

I hope your appointment at the Mayo clinic is more fruitful for you. Hopefully you will not have to wait too long.

Fiona