Neurologist Update

[calamity]

She said it doesn't look like ALS but she wants me to do the EMG to rule it out.  I asked her about MS and she said she had no idea and has to refer me to someone else.  So basically no answers and more wait time.  I started crying and her attitude was pretty much ::shrug:: and she might as well have said 'get out of my office'

She thinks my hyper reflexes are because of anxiety.  You should have seen my face.

I am so incredibly frustrated and just want to give up.  Guess I'll just never be able to walk up stairs normally and will just twitch in all my muscles for the rest of my life.  UGH

[sparkythelawyer]

You need a new neurologist.

You deserve to be listened to.

[rikki]

A neurologist doesn’t know about MS? That’s the craziest thing I’ve heard in a while. I’m so sorry. That sounds so frustrating and terrible.

[jinkies]

I am so sorry. Do you mind saying where you live? Maybe someone here has a rec for a better doc. I have recommendations for good neuros in PA if you are here.

[achi]

I'm so sorry, what a terrible experience. I would get a second opinion immediately.

What a twat.

[isabel]

Oh my God. That's enraging.

My mom has fibromyalgia and has a neurologist she really loves in Austin. If you're willing to travel, I can get you his information.

I agree that you need to seek out someone else who will really listen to you. I am so sorry that today was such a waste of both your time and hope.

[calamity]

Aug 23, 2019 11:19:19 GMT -5 jinkies said:

I am so sorry. Do you mind saying where you live? Maybe someone here has a rec for a better doc. I have recommendations for good neuros in PA if you are here.

It was at Yale.  I was referred by a Yale rheumatologist to the MS clinic, but I guess they saw the twitching and sent me to an ALS specialist instead.  I couldn't believe that she wouldn't even look at my past MRIs and current symptoms.  She hadn't even reviewed my chart before I came in.

[cmeon]

I'm sorry you feel so defeated right now, it is AWFUL when medical professionals brush you off. I hope you are able to find the right doctor to help (soon)- but, feel free to rage at the world today. That's frustrating, awful, and you deserve better.

[calamity]

I've had some doozy appointments but I couldn't believe how cold and unfeeling she was.

I think I need to see someone in NYC or something. Basically I feel like I'm passed from specialist to specialist and they all say "hmmmm, weird"

I tried 6 different RA drugs only for them to be like "well, must not be RA" ::SHRUG::

AHHHHHHH I hate doctors

[calamity]

Aug 23, 2019 11:18:22 GMT -5 rikki said:

A neurologist doesn’t know about MS? That’s the craziest thing I’ve heard in a while. I’m so sorry. That sounds so frustrating and terrible.

RIGHT?! This was my concern when I saw that she was focused on ALS.  Ugh.  And this is Yale, I expected so much more.

[cleo29]

Aug 23, 2019 11:24:37 GMT -5 calamity said:

Aug 23, 2019 11:18:22 GMT -5 rikki said:

A neurologist doesn’t know about MS? That’s the craziest thing I’ve heard in a while. I’m so sorry. That sounds so frustrating and terrible.

RIGHT?! This was my concern when I saw that she was focused on ALS.  Ugh.  And this is Yale, I expected so much more.

From experience with my mom, I do think they specialize in certain areas such as movement disorders, and may not feel good speaking to something outside of that. Not that they know nothing about it, but that it is not what they"do".  But it sounds like you were not treated well from outset and I am sorry for that. I do think finding another one is worth doing.

What are your symptoms?

[keyslover]

I'm sorry.

[followyourarrow]

I'm so sorry. Please hang in there and I hope you get some answers soon.

[calamity]

Aug 23, 2019 11:28:07 GMT -5 cleo29 said:

Aug 23, 2019 11:24:37 GMT -5 calamity said:

What are your symptoms?

I cannot walk up a flight of stairs without my legs being exhausted to the point of having to stop.  I can make it half a flight.  I have twitching in my arms, legs and face, plus hand and foot cramping. I can't carry a cup of coffee by the handle anymore. 

I have pain behind my left eye and sometimes blurred vision.  I sweat like a beast (this is new, even my H is like woah)  My pulse and blood pressure are higher than normal for me (100bpm resting HR and about 150/90 BP on average).

I wake up to my legs feeling like I ran a marathon.  I'm exhausted all the time.

I'm medicated for depression, but it's always there.  I think that's it.

[cleo29]

Aug 23, 2019 11:33:02 GMT -5 calamity said:

Aug 23, 2019 11:28:07 GMT -5 cleo29 said:

What are your symptoms?

I cannot walk up a flight of stairs without my legs being exhausted to the point of having to stop.  I can make it half a flight.  I have twitching in my arms, legs and face, plus hand and foot cramping. I can't carry a cup of coffee by the handle anymore. 

I have pain behind my left eye and sometimes blurred vision.  I sweat like a beast (this is new, even my H is like woah)  My pulse and blood pressure are higher than normal for me (100bpm resting HR and about 150/90 BP on average).

I wake up to my legs feeling like I ran a marathon.  I'm exhausted all the time.

I'm medicated for depression, but it's always there.  I think that's it.

It seems very all encompassing, which does not make me think ALS. From what I have learned with my MIL, it comes slowly and is not really all over.

Have they mentioned Parkinson's at all? How is your sleep?Not to toss another scary possibility, but just wondered.

People may experience:
Tremor: can occur at rest, in the hands, limbs, or can be postural
Muscular: stiff muscles, difficulty standing, difficulty walking, difficulty with bodily movements, involuntary movements, muscle rigidity, problems with coordination, rhythmic muscle contractions, slow bodily movement, or slow shuffling gait
Sleep: daytime sleepiness, early awakening, nightmares, restless sleep, or sleep disturbances
Whole body: fatigue, dizziness, poor balance, or restlessness
Cognitive: amnesia, confusion in the evening hours, dementia, or difficulty thinking and understanding
Speech: difficulty speaking, soft speech, or voice box spasms
Nasal: distorted sense of smell or loss of smell
Urinary: dribbling of urine or leaking of urine
Mood: anxiety or apathy
Facial: jaw stiffness or reduced facial expression
Also common: blank stare, constipation, depression, difficulty swallowing, drooling, falling, fear of falling, loss in contrast sensitivity, neck tightness, small handwriting, trembling, unintentional writhing, or weight loss
Consult a doctor for medical advice
Sources: Mayo Clinic and others. Learn more

[calamity]

Honestly cleo29 , that does all sound like things I am experiencing. Thanks for posting that

ETA- I've been waking up at 3AM regularly.

Isn't Parkinsons generally older people?  Maybe it doesn't matter I'm 37

[calamity]

mofongo, yes she will be doing the EMG. It could be a cultural thing, and maybe my expectations were too high, but really she couldn't have cared less.

[ohgillian]

I'm sorry. I know how trying to find a new doctor (AGAIN) can be exhausting. If you aren't up to it /b this is so enraging and demoralizing, maybe your H could take a stab at getting you an appt elsewhere.

[jamaicam]

Oh calamity, I am sorry that you keep hitting walls. Sending hugs your way and hoping that you are able to get someone to pay you attention asap.

[whitemerlot]

I’m sorry you were treated so poorly. What a long and frustrating process to try to figure out what is happening.

[maudefindlay]

I am so sorry you are going through this and to be treated that way is unacceptable. You matter and deserve to be cared for like you do.

As someone with a healthcare background, there are some doctors who just want to cross you off their to do list when people and their health are really always ongoing and should be viewed that way. I know you have seen other doctors, but please go see another after this one. You are worth it.

[calamity]

mofongo, I had thoracic and lumbar MRIs. I have degen disc disease too, and they found a 2mm cyst the length of my cord but they say that is incidental (but they weren't there on previous MRIs)

Thanks jamaicam, I was really hoping for SOME sort of answer. I feel like it shouldn't be this hard?!?

[jamaicam]

Aug 23, 2019 12:06:17 GMT -5 calamity said:

mofongo , I had thoracic and lumbar MRIs. I have degen disc disease too, and they found a 2mm cyst the length of my cord but they say that is incidental (but they weren't there on previous MRIs)

Thanks jamaicam , I was really hoping for SOME sort of answer. I feel like it shouldn't be this hard?!?

You are right, it shouldn't. I will say that hearing I had MS was hard, but there was such a relief in knowing what it was and knowing we could now start doing something about it. I hope you get that feeling soon. 

[cleo29]

Aug 23, 2019 11:54:20 GMT -5 calamity said:

Honestly cleo29 , that does all sound like things I am experiencing. Thanks for posting that

ETA- I've been waking up at 3AM regularly.

Isn't Parkinsons generally older people?  Maybe it doesn't matter I'm 37

I think many times it is, but Michael J. Fox was diagnosed with young-onset at age 29. So, perhaps worth mentioning or checking to see whoever you see has experience with it.

I think the not knowing can be so scary and draining. I hope you get some answers and i hope that it will not be something serious and that you will get relief soon!

[keyslover]

Aug 23, 2019 11:33:02 GMT -5 calamity said:

Aug 23, 2019 11:28:07 GMT -5 cleo29 said:

What are your symptoms?

I cannot walk up a flight of stairs without my legs being exhausted to the point of having to stop.  I can make it half a flight.  I have twitching in my arms, legs and face, plus hand and foot cramping. I can't carry a cup of coffee by the handle anymore. 

I have pain behind my left eye and sometimes blurred vision.  I sweat like a beast (this is new, even my H is like woah)  My pulse and blood pressure are higher than normal for me (100bpm resting HR and about 150/90 BP on average).

I wake up to my legs feeling like I ran a marathon.  I'm exhausted all the time.

I'm medicated for depression, but it's always there.  I think that's it.

Do you have a good primary doc?
I'd find a good Functional Medicine Doctor.

Symptoms could be Lyme/co infections. Late stage.
Mold or chronic inflammation, which if you have a weakened immune system makes you more susceptible to mold/mycotoxins.

[Deleted]

I’m sorry.

Fuck her.

Seriously, FUCK HER.

I obviously am grateful for excellent neurological care, but goddamn has my experience been that neurologists are assholes.

Don’t give up. Seek another opinion. You deserve answers. And compassion.

[mountaingirl]

I’m so sorry. It feels awful (and is awful) to feel dismissed. I hope you get answers, good answers, soon. 💕

[sunnysally]

calamity, I'm sorry the new doctor was a jerk. I know you were hoping to get answers at this appointment. I've been in a similar situation and it really, really sucks. You've gotten a lot of good suggestions here, and I dont have anything to add but my empathy. Hang in there.

[calamity]

keyslover, I thought of your message today and would have asked her but I knew she wouldn't give me a straight answer.

I have talked to my primary about chronic Lyme, but she is one who things it's a waste of time and money. This is something I should look into though, as I did have Lyme twice and my blood work is showing chronic inflammation.

[wildrice]

Ugh I am so sorry your appointment wasn't helpful, and especially sorry that the doctor was a jerk. I know being a doctor is wearing, but I don't understand why people go into a caring profession if they aren't caring people. At the very least they should practice faking it! Treating you that way is inexcusable.

I hope you are able to find another doctor that will listen to you. There has to be an answer somewhere. I just wish it wasn't this hard to find it.