I'm a doctor ... so I know all

[shelleynshaggy]

Ok - so of course our PCP is on va-kay because we have had 2 unexpected doctor's visits this week.

First for me -- I went in to getthis stupid abdomen pain figured out (long boring story) BUT
First they send some med student to take my history... (really love recreating the wheel AGAIN) I try to politely smile while he tries to neatly pack my life into his oh-so-small box of knowledge. I listen as he tells me how to handle stress ...blah... blah ... blah while thinking where he can go shove his theories.

Then I get to listen as he is outside the room trying to explain what he thinks he heard to the "real" doctor. The "real" doctor comes in - now this man I have seen beforeand actually kinda like. He seems good and is nice with a kinda wry sarcastic sense of dry humor (in a good way.) That is until he seems to thinks he understands that ALS and FTD go hand-in-hand. He seems to think he knows that all ALS patients have dementia or other mental deficit and seems to disagree with me when I tell him that I really think the FTD is much more difficult to deal with at this point. My parting words were "look - I live this and don't understand it. Don't assume you do. "

Then today I took Jim to ER after he nearly fainted. His hydrostatic pressures are all over the place. (anywhere from 150/90 laying down - which is very high for him - to 100/72 while standing.)

First I get a triage person who confuses ALS with ACL (I don't want to know what she thought FTD was.) We got agreat nurse and ok doctor. They rehydrated Jim and sent some stupid idiot in to retake his pressures - which he did wrong. I informed the nurse that I didn't think there was much improvement and the repeat pressures were done wrong. She is obviously irritated (with the idiot) retakes the pressures. She thanks me and leaves. I hear her explaining to Mr. Idiot the correct method to which he argues "that is what I did." Ugghhh... He is speechless when the nurse tells him that the patient's wife told me you did it wrong. This is why I avoid ER.... 7 hours later all Jim got was a bag of saline, blood work and discharged with the same problem he walked in with... dizziness and funky pressures.

The ER doc says that the changes in blood pressures can be a result of the ALS. Anyone have an idea on this? Personally I don't even trust ER docs as far as I can throw them.

We are following up with neuro and got the info he wanted in the ER visit. However, I can't wait until the New Year when all the good docs get back and the low-men-on-the-totem-pole who have to cover the holidays are gone!

VENT OVER. ok .. now to move onward!

 

[pepsiman]

Well, Shelley if the blood pressure changes can be attributed to ALS, this is the first time I've ever heard of such a thing. As far as I know ALS doesn't generally affect any of the vascular systems. But I'm not a doctor and I really don't know anything. I do know Liz's blood pressure never changed. I would suspect something else here. When I see this sort of thing, med issues are my first thought. If this is new, what different drug has Jim just started taking that might be causing this? Any change in diet? It looks like he's had some problems with hydration. That can be either a cause or a symptom of the blood pressure problem. I'd still be looking at the meds for the answer.

Dick

 

[LizT]

my PALS has never had blood pressure issues and he has been diagnosed for 8 years.

 

[catcaniac]

My spouse has had increased blood pressure at doctor visits since we started dealing with this. Not sure if it is a side effect of the seizure meds he began in April or just that he gets stressed and freaked out every time we go to the doctor. I highly doubt it is really directly correlated to the ALS.

 

[Jellycat]

Hi Shelley,
don't know if this will help any. My mum had similar blood pressure issues when her legs first began to weaken. They had a Physio to a series of balance tests as well as usual bloods & pressures. They identified that it happened when she would move from sitting to standing or lying to standing. No great solution offered except to do those particular manoevers v slowly. The dizziness end of it was better after she stopped using scopoderm(hyosine) patches which were prescribed to reduce saliva. Maybe worth looking at any new meds Jim has started as others have suggested. Was glad to see the back of the dizziness and well the other changes came to an end as mobility decreased.

Take care & hope you find a way through soon.

 

[mare]

Shelley-
Geez, it always seems like you get hit with the one-two punch! If venting helps, vent away..... (I congratulate you on your reserve to not throw in a couple of *@#! words)

My take- if the blood pressure was due to dehydration, it would have improved/stabilized with the IV saline.

I tend to agree with Dick- may be med interaction. Also, you said he had been having abdominal pain. Did they prescribe anything for that when you saw the PCP?
If he is still having intermittent pain, that could possibly cause the increase in BP.

I think your husband is on antidepressants for his FTD (?); some medications will interact with those type of drugs. So, it is not one drug or the other that might cause symptoms, but the 2 in combination.

Dick is right, in that ALS does not directly effect the vascular system, and therefore should not effect BP. I checked this thoroughly myself because my husband did have increased BP. He was always consistent at 110-120/70-80. (although, it is normal to have more fluctuations throughout the day).

At his clinic visits, he started to creep up-(just like catcaniac's husband) and they actually have a name for this: "white coat syndrome"- which is just to say that some people get anxious when seeing a dr. which leads to increase in BP.
But my Jim does not tend to anxiety, so I didn't buy it.

He had been put on Klonopin/Clonazepam so I wondered if it was due to that.
But then he had a few episodes of dizzines, BP was up to 150/90 once (I was concerned); it was determined it was a middle ear problem. But, I monitored his BP for a few weeks. It is a little higher than before (130-135/80-85) but he is asymptomatic, so we stopped being obsessed with it.

I know it is harder for you to assess the situation since Jim can't always tell you exactly how he feels.
As for the triage person, you just know he/she was thinking the FTD had something to do with flowers! :twisted:

 

[Zaphoon]

Shelly, I loved reading the story of your recent ER adventure. So, so true! 2nd stringers on over the holidays! Oh, alright, maybe even some 3rd stringers. Who's teaching these people?

 

[Katie C]

Shelley.. I was thinking after we talked last night... I had trouble keeping Glen hydrated too and it took a while to figure it out. And really it's more FTD related than ALS... just like they can't connect choking with eating.. they don't always recognize "thirsty" as meaning "I need to drink something". Add that to water especially being very hard to control when swallowing and you have a perfect recipe for dehydration. Some things that worked here: popsicles (ok, especially the super hero ones). Jello, soup anything with a high moisture content.. and monitoring.. I know it's one more thing on your plate, but you may have to really watch/remind him to take in fluids.

 

[Marjorie R. Wilcox]

Rick has "white coat syndrome" which means his blood pressure is high at the doctor's office.
At home it would win a prize. I always take some readings at home... active and resting, and write them down and hand
them to the nurse at our appointments. They are totally at ease that he is fine at home. He takes no meds for anything
...not even vitamins... and has excellent reports on his blood work. It's my wonderful cooking and wifely duties that I maintain.
Yeah!

 

[shelleynshaggy]

Mare - actually it was me with the abdomen pain.
I know it's not white coat because his bp is always good at the doctor's office. It just varied somuch depending on his position.





Mare - actually it was me with the pain, not him.
I don't think it's white coat syndrome because it is always good at the dr. It changed with his position.

I actually called my work/hospital hoping one of the docsI knew was on- no such luck. The one thatsaw Jim about 1year before diagnosis was on - was tempted to go then just to give that guy a piece of my mind. He diagnosed Jim with muscle strain. No, I don't expect himto even suspect ALS in an ER diagnosis - but I just remember I kept telling that doc"you are not listening to what I'm saying."
Actually met a patient since then whowent in

 

[mare]

Shelley-
I have a bad head cold; obviously I can't "see" straight when my head is all congested!

Hope you both are doing better. No visits to ER today- New Year's Eve is the worst!:evil:

 

[HelenL]

Hi Folks, I'm sorry, but I am trying to figure out what FTD is? I did a search and it didn't come up... (I'm sure it will be really obvious to me, once someone tells me what it is!)
Thanks,
Helen

 

[mare]

Helen-
FTD stands for fronto-temporal dementia. It is the areas of the brain (frontal lobe and temporal lobe) that are effected, or damaged by the same defective TDP-43 protein that is found in the spinal cords of ALS patients.
It is not an Alzheimer's Dementia, but I think some of behaviors are similar. If you read some of KatieC's past posts, she describes her husband's behavior.

There is a small % (not sure exact number) of people who have ALS that develop this; and some people start with FTD before ALS symptoms. (Shelley's husband Jim; and I think KatieC's husband had FTD first as well)

I'm sure Katie & Shelley can give more details; they are well versed on this due to their first-hand experience.

 

[joelc]

FTLD

 

[HelenL]

Thank you! Yet another horrifying thing to look forward to I guess...
How 'bout a cure in 2011? Or even a treatment...
Helen