ALS Clinic Nurse & False Hopes

[Lkaibel]

SO this morning my husband calls the ALS Clinic and gives them an update on his ER visit yesterday that turned out to be ear issues. Somehow, the topic comes up that he apparently has never had a Lyme test. Not sure how they could have missed that in a million blood draws but apparently per their records he never had one. Nurse tells him all his symptoms (including the ALS ones) could be caused by Lyme and he needs to have a Lyme test.

Now he is hot to have the Lyme test. I am going to give him a fairly high chance of antibodies to Lyme given his intense outdoor lifestyle in one of the great tick capitals of the Northern hemisphere, but THIS is ALS. The Doctor is going to call back, but right now I am furious with that nurse.

This is ALS, not Lyme. False hope will lead to let down will lead to depression. Sucks, sucks, sucks....

 

[Narrowminded]

Lenore I too hate false hope, however if he wants the test I say do it. If you don't he will always wonder and could become resentful like you don't want him to get better. I know all the tests etc, but that test won't hurt.

Hugs,

Sue

 

[Lkaibel]

You are right Sue. He is actually having the blood draw tomorrow. Dr. Said it's controversial, but he always tests for it and assumed other/ first clinic had done it but told him it is unlikely Lyme could do this. My husband likes that peak of light and I suppose you never ever know.

 

[KimT]

Mine was negative and they didn't do it at Mayo. My GP did it.

 

[affected]

Once this is settled, whether he tests positive for lyme or not, put a complaint in writing in. Make it a polite complaint pointing out that the clinic should have a policy and nurses respond according to that and not play on the emotions of people with a terminal illness.

I'm really sorry someone working in an ALS clinic would say this.

 

[Lkaibel]

Yes, agreed Tillie. Months ago I spoke with people on Lyme and ALS and the consensus seemed to be that it is incredibly rare for Lyme to produce intense neuro symptoms, and when it does if it "mimics" anything it's MS not ALS. My own neuro for my migraines who I saw today said maybe 20 years ago he saw a patient with bad Lyme who had severe neuro symptoms.

It's like talking about the one guy who was misdiagnosed with lung cancer at Mayo when I was in high school. Friend of my Parents and a one off that will likely never repeat.

 

[Lkaibel]

So Brian went to the Dr today and had to talk her into doing a Lyme test because she said 20% are false positives.

She did do the test. He told her that he had to pursue every avenue with this. She did disingenuously argue that if he had a Faldo positive and got antibiotics he did not need, there were risks to those drugs. Brian naturally replied that right now he had a terminal diagnosis and was not very concerned about remote risks.

I honestly wish she had hammered more on the low to no chance Lyme, even if he had it was mimicking ALS.

 

[mpnatx]

"Somehow, the topic comes up that he apparently has never had a Lyme test."

Lenore,
This seems odd to me. A Lyme test is usually included in the first round of many blood tests to eliminate all other possibilities of a mimic disease. To leave this one out doesn't sound like they covered everything. Even if you're sure about the diagnosis, it should have been done and Brian deserves to at least feel all standard tests for ALS were completed for an accurate diagnosis.

If I found out I wasn't given a Lyme test before diagnosis, I'd have one immediately for my own peace of mind.

 

[affected]

Sometimes it's so hard to watch when a health professional just doesn't handle arguments the way you feel they should!

I agree that in the beginning if there was any possibility then lyme testing made sense, but at this point in the game it's obvious this is not lyme so it seems moot to me.

I hope he doesn't get his hopes up too high xx

 

[Lkaibel]

Well, now they say he did have one and it was negative in May. However, back in my health care days I myself saw times where there seemed to be some " mix up" on if a test had been run, particularly "rule out" tests, and often as not they really had not.

I will say I am not as enamoured of our clinic as I was, and it is widely considered to be one of the nations finest.

I think Brian's expectations are in check, actually so that's good news. I think it's good he has a Lyme test because if he did have it, it needs treated because it can only make his ALS (which he does have) worse.

 

[affected]

Yeah I'm always that painful patient that insists on being my own copy of every test result instead of being told - the doctor said 'no further action'. That's how they give us results here - if the result for whatever was in normal ranges that is what is said, if not in normal ranges they say would you please make an appointment to come discuss your tests.

I'm glad his expectations are in check, that's the biggest thing really!

 

[Jrzygrl]

I will say I am not as enamoured of our clinic as I was, and it is widely considered to be one of the nations finest.

We are on our second clinic. First one we never knew what resources would be cut next and who wouldn't be there when we had our appointment. Second one is starting to seem short on answers to anything. Same old - well, everyone progresses differently. Hubby says he feels we are there more for them than for him.

ALS SUCKS!

 

[Lkaibel]

We are on our second clinic.
Hubby says he feels we are there more for them than for him.
ALS SUCKS!

Bingo! I can see exactly what your husband is saying. I feel like those visits are really just a scattered and disorganized type of research.

I much appreciate the free walker, knife and bath chair but the rest you can have. Our Dr is a great guy, many on his staff not so much. In June, they handed us another patient's visit notes. We took them home before we knew and called the next day.

Maybe it's good I left healthcare, because given the privacy issues I would have half a mind to terminate someone who did that.

 

[affected]

My Chris had FTD and yet he figured that out too. We only ever went twice and the second time was so stressful with the travel on top as it took 5 hours in peak traffic to get home.

It was a bit different for us too because our clinic was in the next state and we only saw the neurologist there because they couldn't do any allied health (PT, OT etc) for us, we had to do all of that locally. So really nothing for us in going.

What you do need is someone who understands ALS that can take you through the journey. If that happens to be a clinic neuro then great, if not then you go with what is best for you. <tillies two cents>

 

[Manhattanite]

Yes Lenore I have come to the same conclusion about ALS clinics... We were lucky that we were able to go to two different ones and pick and choose the best from each. Now we only go to one and mostly to check in with our neuro and get our prescriptions filled. With ALS being terminal, progressive and uncontrollable, my expectations of what the ALS Clinic can do for us has dwindled to very low levels.