Physiatrist?

[ShiftKicker]

After my very disheartening and unproductive (I thought) physio appointment last week, where we couldn't work out how to get a stretch without setting off cramping, I had just about given up.

Apparently the physio was not deterred and sent in a referral to a type of doctor I am not familiar with- a Physiatrist. This is with a specialty spasticity clinic not actually part of the ALS clinic, but with specialists who are attached to the ALS clinic in some way. It's not till May, but I'm excited to go- not only to see what solutions they may have (lots of drugs, apparently- woo!), but also because there's still a huge amount of doubt in my mind about my MND diagnosis. Perhaps he'll see something others looking for MND specifically missed. And perhaps he can explain to me the actual mechanism of UMN issues so I know what the heck is going on.

I keep getting told I look like I have no real gait disturbance (I love this!), which is an improvement on how it was when I first noticed my leg catching over a year ago. I am hoping an expert in all types of spasticity can tell my why I'm quite flexible, albeit slow and weak, during the day, but am spastic in varying degrees in all parts of my body when at rest. My family physician thinks it's just the drugs are working well, but I take none during the day- only at night.

Anyhow, the point of this whole rambling post is, has anyone any experience with a Physiatrist? If so, what should I expect from an appointment? It's not till mid May, but I am anticipating all sorts of answers. At least, I am hoping for answers.

Fiona

 

[lgelb]

Physiatrists associated w/ the ALS clinic do a variety of things toward symptom alleviation, but they are unlikely to second-guess your diagnosis. The full label is physical medicine & rehabilitation. Look up yours and see what background s/he has and you may infer more about what you might want to talk about.

When you're at rest, UMNs have less to do since they basically talk to the LMNs that control your voluntary muscles. When they have less to do, the damage they have suffered may be less apparent.

 

[Suzannah]

Hi Fiona,

I see a PM&R doc for my botox injections. His specialty is actually SCI (spinal cord injury), but there's a lot of overlap with UMN and SCI symptoms.

You're right about the solutions being "mostly drugs" When Baclofen was not working for me (it caused a paradoxical reaction and made things worse), he put me on Tizanadine, which I can only take at night because it is sedating. It helps. I have a similar pattern as you - much worse at night.

I agree with Laurie that they might be unwilling to second-guess your diagnosis. I went in originally went a diagnosis of hereditary spastic paraplegia (a UMN disorder), which has since been possibly revoked and maybe changed to dystonia. My PM&R doc's reaction to the possible change in diagnosis was, "Well, the good news is that botox is the treatment for dystonia, too!" Hrmph.

It's certainly frustrating not knowing what your real diagnosis is. I'm right there with you. Is your physical therapist a neuro PT?

What I have learned from the past two years of decline and diagnostic mystery is that even if I can eventually pin down the "real" diagnosis, nobody can tell me anything useful about how to fix it anyway. So I've just had to experiment and make up my own solutions as I go along.

I'm hoping that your doc will be more informative since they are specifically part of a spasticity clinic, but there's a possibility you might not end up with a lot more information. I will cross my fingers for you that you do!

Also, did I read that you are going to do the new genetic testing that just came out?

--Suzannah

 

[laurel]

Hi Fiona,
I don't have ALS (hubby has CIDP and I have MS). I saw Dr. Reebye at GF Strong who is a physiatrist. He may be the one you are booked with? He had a bunch of med. students with him and a resident when he assessed my gait etc. He was very thorough having me walk without aids and without while observing. He did a very comprehensive history. I liked him and he was helpful. He seemed a cross between an orthopedic specialist and a physiotherapist to me. Plus he is very kind and very nice looking LOL . He seemed a very straight forward type so maybe he will offer some opinions.
Laurel

 

[ShiftKicker]

Hi Laurie-
I have had every medical professional I've encountered comment on how much my gait has improved from when this all started. It's a bit of discord when they all still treat me like there's something still seriously wrong, regardless, as the motor issues have spread beyond a single limb-though still quite mild. I was under the impression that motor neuron disease does not improve, but my gait has definitely improved over the last half year. The ALS doc confirmed motor neuron involvement via emg - something about my "recruitment" and chronic denervation that she said was consistent wth MND (I'm missing acute denervation), but I don't seem like anyone they've come across. At night is when everything comes to the fore- this is where my muscles do their own thing and randomly tighten, pop, twitch, cramp and generally have a life of their own. Not so much unpleasant, just weird. I'm hoping the physiatrist has something to add with regards to why my muscles do what they do when at rest- and if, in his experience, it can be subscribed to MND or something else.

Suzannah- Did you ever carry on with the l-Dopa treatment? Or is botox the solution your physiatrist settled on? I've been offered botox, but I'm just not in any real pain or that imbalanced to warrant it quite yet. If this new guy can come up with something different, drug-wise, that helps with the night time muscle stuff, I'll be really happy.

I am not able to get to the NIH for the gene sequencing currently- it's a bit of a trek- so did not pursue. I know a diagnosis doesn't make a difference in treatment, but for me, psychologically, I'd like to know what mechanism is causing my body to go haywire, and perhaps figure out how long I've got to plan for.

The physio I saw is the ALS clinic physio- I certainly hope she's a neuro-physio! However, she seemed a bit confounded by me- which is why I am in doubt of true MND. I hear "That's strange..." and "atypical" quite a bit from all my doctors regardless of my official MND diagnosis.

Laurel- I thought it was Dr Reebye (his name was on the letterhead of the referral confirmation), but when I called to confirm the appt, they told me it was another doctor- Dr Winston. Of course I looked him up online to see his training, and I was excited to see some very positive comments and reviews. Sounds like he's quite fantastic in his own right and I'm looking forward to my appointment. Sadly, I will miss the handsome Dr Reebye...but Dr Winston sounds right up my alley with his former ballet/dance background and many years of training.

Many thanks- everyone's comments give me a great deal of confidence about seeing a physiatrist.

Fiona

 

[lgelb]

Fiona, did you have MRIs of the brain and spine?

 

[ShiftKicker]

Hi Laurie, yes I did. I got the full MRI works- twice (head, cervical, thoracic and lumbar-they were 7 months apart), along with a CT scan top and bottom and every single blood test known to man. Everything was absolutely clear. I even got a comment from the radiologist who did my most recent MRI that I was in extremely good shape for a woman my age.

 

[Suzannah]

Fiona,

I do have sympathies with you entirely on the "that's unusual" comments. I get them all the time, too, and it's frustrating. I want the same thing - a name, so I can at least do some kind of planning for whatever might be coming.

In answer to your question, I am taking a temporary break from the L-Dopa. I started it once last summer and once more in December, but both times were confounded by having my botox appointment the same week, just by coincidence. I started having weird posturing in my arms and hands so I backed off til I go to NIH again in a few weeks.

I would recommend for you holding off on the botox as long as you can, but then don't be afraid to use it if you get to a point where you need it. It has helped me a lot.

You mentioned your new doc has a dance background - do you also? Here's something interesting. My walking speed is pretty terrible - at my PT re-eval last week, my recorded walking speed was slower than both the average 80 year old, and the average stroke patient (I'm 36 and an athlete).

But I recently started taking an adult ballet class, and d*mn if I can't still do ballet! It's so bizarre. The muscle memory and the effects of the music are so strong I can almost use my legs normally. If you have a dance background, maybe you should try putting on some music and seeing what happens! (safely, of course )

Hope you find some answers soon.
--Suzannah

 

[Atsugi]

"muscle memory and the effects of the music are so strong I can almost use my legs normally."

Now, THAT's very, very interesting! You should point that out to your neurologists and see if they can venture some explanation. Let us know if you get an answer to that one.

 

[affected]

Suzannah really interesting - I just had a conversation a couple of days ago with someone telling me about some studies with disease like parkinsons and alzheimers where they have found music (that the person closely relates to, not just any music) can produce profound effects.

So a man with parkinsons who could not long walk unaided was able to waltz to his favourite old tunes, and muscle memory seems to be the link they were looking at.

Interestingly another case reported was a lady with alzheimers who had not spoken for 2 years. Listened to her favourite old music with headphones on, was tapping her foot and smiling. After it finished and they took the headphones off she held a lucid discussion!

What this means for our PALS I don't know, but it was really interesting and could develop into some kind of very helpful therapeutic effect.

Follow this link, and listen to the episode - music on the brain
http://www.abc.net.au/catalyst/stories/4421003.htm

 

[gooseberry]

Music therapy is also used for kids with autism. It "wakes" up certain parts of the brain. My son can read a passage a few times and not comprehend it. With music he reads it once.

 

[Nikki J]

Good luck with the appointment. My experience and thoughts. Former dancer and very strong muscle memory especially if I hear the music for something I used to perform but my weak leg is my weak leg and no matter if it is regular pathway saying walk on your toes or muscle memory saying dance on your toes it won't happen.

My theory. Suzannah's issues are UMN. When the signals come from a different part of the brain and travel a different route they reach healthy lower motor neurons and she dances. With lower motor neuron disease wherever they start the impulses have to go through the relevant lower motor neurons- a dead end

 

[Suzannah]

Yes, I suspect Nikki is correct. Since I (apparently) don't have LMN damage, there's room for the signals to travel a different pathway and still engage the lower motor neurons. I think Fiona is mostly UMN too (sorry to speak around you, Fiona), which is why I mentioned it might be helpful. Thanks for clarifying that - I should have been more clear.

Suzannah

 

[Nikki J]

You were perfectly clear Suzannah. It is I who probably was not. I was more responding to Tillie's comment about what it might mean for PALS and I think as you do it might be helpful to those with significant UMN involvement and well as to PLS and other UMN only people. Not so much if you are lmn dominant

 

[ShiftKicker]

Zoiks- No, I phrased that wrong. I did not dance myself, but had the pleasure of encountering many professional dancers at my previous employment. Dancing and myself only encounter each other with more than 3 glasses of wine- I'm envious of anyone who possesses the confidence and grace to dance!

Dancers know their bodies, their limits (or how far they can go before permanent damage- and can make the educated decision to push further sometimes), and are some of the most dedicated and collaborative people I've ever met. My own activities ran to contact sports, and I saw way worse damage and injury in the dancing community than anything I or my sports colleagues came up with. Dancers are athletes, with the added pressure of having to make things look both effortless and beautiful. A physiatrist with an extensive personal background of professional ballet in addition to years of medical and specialist education is an exciting prospect for me!

I love what a question on this forum can prompt- this was really informative. Thank you!