Best Neurology Center in the US?

[Meg1]

Meg,

I am not sure if you are talking to me? What medical professionals have I seen other than a PCP and a neurology nurse practioner? Leslie

I didn't read all your old posts but the ones I did read indicated that you've had a complete cardiology workup (because your initial symptoms were heart-related) and have seen a rheumatologist who diagnosed you with fibromyalgia. You've also had a clean EMG.

I haven't seen anyone related to als until yesterday and he was a jerk. I came to this forum for some listening ears and frankly, say I am emotional today if you want, you seem to be demeaning to some of us.

Furthermore, it ABSOLUTELY DOES matter to have the diagnosis. I don't have money to deal with the illness, I will need help. HELP ONLY COMES WITH DIAGNOSIS. So that, I would consider, is a downside. And, he didn't say I didn't have als, he said, "common things are common, rare things are rare" and he proceeded to schedule the EMG.

I am glad for you, that you can be so laissez-faire about the diagnosis. I am not sure if you feel physically bad, but I have very caring feelings for everyone on his forum who is ill and if they are focused on als, such as I, they feel ill. So, Meg, I do believe his diagnosis. Oh wait.....he didn't give me one.

I just really can't believe your post! Leslie

I've been reading ALS forums for years and in my experience it is very, very rare for an undiagnosed person who presents with a plethora of symptoms involving multiple systems to be eventually diagnosed with ALS. In fact, it is extremely unusual for the early symptoms of ALS to involve debilitating fatigue such as you describe. ALS is typically (but not always, of course) a disease of the robustly healthy. It is disturbing and baffling to me as a PALS that you seem absolutely determined to have ALS--you're actually angry that you can't find anyone who will diagnose you with it. My strong suspicion (and I hope I'm right about this) is that if you could successfully treat your depression a number of the symptoms you are attributing to ALS would disappear.

I'm betting that that EMG will turn out to be totally normal. Good luck and let us know.

 

[ltr]

I appreciate your insight on what you know over the years. It is helpful and reassuring to me. I have talked to others on this forum, though, who have been exhausted. I am also a little perplexed about why you would say I am angry that no one will diagnose me with als. I still think you may have me mixed up with someone else. Of course, you did say similar things to another member. I am angry that I can't get my doctor (PCP) to listen. I have only met one neurologist at an als neurology center, and as I noted, and others agreed, it was a strange experience, but if you read any of it you would see that I wrote I am happy to have an EMG and will wait to see what it says. I also asked everyone to hope for a clean one.

My symptoms did begin with my autonomic nervous system. So, yes, the doctor did start with a cardiologist. Does this have anything to do with als? Because I didn't know that work-up would rule it out. Not until months later did the muscle twitching, weakness and fatigue start.

I really wish you didn't speak so harshly to others. I know that I am depressed over my physical condition, but I have never heard about someone twitching like a bag of microwave popcorn with weakness and unable to button a shirt caused from depression.

I am sure when I ask you where you get the idea that I am "absolutely determined to have als" you will pull some part of a post I wrote to try to back your frivolous claim, so I will just end with this - I am not a hypochondriac and I am not suffering from psychiatric illness and I don't appreciate your insinuations when I only came to this site for advise and help. Thanks for wishing me luck, I really do appreciate that, but please don't write to me again because you do cause me to feel worse. Leslie

 

[mlb]

Leslie, I often wondered too. Who does Meg1 address when she posts her replies. I noticed that Al does the same thing... I started doing the same in my replies to them but I am not that contemptuous. It is not a nice trait I must say. Anna

 

[ltr]

I feel bad, that I came to a forum where people don't even know me and there is someone who doesn't care for me. What the heck. I just can't win!

 

[mlb]

Leslie. Don't feel bad please. I have learnt that this forum is a mixed bag. Same as you find people to be everywhere. Illness does not make you a better person or a worst one. You are who you are. We are all different and this being an open forum, it is inevitable that you will come across someone that will grate against the grain.

If you didn't have concerns about ALS, you would not be on this forum. You are doing all the right things for you including putting up with that bad mannered neurologist until your results come through. Stick to what you believe is right.

Good luck Leslie. Hope things work out well for you.

Anna

 

[Al]

Anna, Meg and Leslie. I'm not sure from your post Anna if you want to be addressed by name or not but this SUPPORT forum is supposed to be about support. I know getting a diagnosis for these illness can be trying and while we may sometimes think something, it is better to not say it. People ask for advice here but let's not be brutal about it. Everyone here has met at least one doctor with the bedside manner of a turnip. Let's try not to be like them.
AL

 

[ltr]

Thanks so much Anna. If my symptoms were impairing my life I probably wouldn't have started looking into what it could be, thus wouldn't be here. So your right, I'm on the forum for advise and help, hoping for the best, but still knowing there is a problem. What I have found here, is that there are many, many others who have similar symptoms, but haven't been diagnosed with anything. The people who haven't been diagnosed want answers because some people just plain need them, some for their mental health, some for financial reasons, some for meds to relieve the pain of their ailment. You're also right about my bad mannered neurologist. Like I said earlier, he may be a flake, but he ordered the right tests, so I am not giving up on him. If the EMG comes back normal, while hallelujah! But, that doesn't mean I don't want him to investigate my symptoms and link them to what is causing them. I don't think I am too different than others here. Thanks for your words of encouragement!

 

[mlb]

Leslie. When is your appointment for the EMG?

Anna

 

[JACKIEMAX]

To Meg, Leslie, And All Als Patients, And Caregivers

It is truly upsetting to read some of these posts, esp. the ones that don't seem to understand or have empathy for als patients and their caregivers. als is a difficult disease to get diagnosed. doctors just do not know enough about it, and they do not want to hand you a death sentence, which diagnosing als is doing, until they are very sure.

of course als cannot be helped or dealt with without a diagnosed. you can't get meds, you can's get a wheelchair, or bipaps, oxygen, or anything that als patients absolutely 'have' to have to survive.

my husband went to three neurosurgeons, one respiratory specialist, a ent dr., a primary care dr, and none of them would give us a diagnosed., until we finally went to vanderbilt als clinic in nashville, tn. so, now we are able to receive the help we need so desparately.

i do not have the pain, twitching, muscle spasms, not able to cut meat in a restaurant, unable to buttom my shirt, turn the key in the car. i am not the one who has to walk with a cane or walking stick and still walk so awkwardly that people stare. i am not the one who is unable to attend church services because there is so much flu going around and my respiratory system cannot handle even a simple bad cold. i am not the one who has to sleep with a ugly mask over my face each night in order to breath..... but my husband does. it is heartbreaking to have to watch him go through all this, and feel his pain. it is heartbreaking, and all the caregivers reading this understand what i am saying.

so, let's encourage each other, and until you've been in our shoes, please don't say unkind and unsympathetic things. words said cannot be unsaid.

one neurosurgeon completely made fun of my husband on one visit saying he could not possibly have als or he would be walking like someone from outer space - a monster-like creature. at least that is what the illustration he gave us looked like.

thanks for allowing me to vent. als is a horrible horrible disease, and this forum is the best thing that ever happened to me since his diagnosed.

jackie

 

[CindyM]

Conrad, try to get a doc to prescribe Quinine pills. I got them without a DX yet and they work very well. I was cramping up like a twisted pretzel and sleeping was impossible. Now I'm just fasciculating and weak. (lol)

Keep at it. You know your body and you know when something is wrong. Regards,Cindy

 

[ltr]

Thanks everybody and I am sorry if I upset the forum. Al, you are so funny......the bedside manner of a turnip. You made me laugh and thank you for that.

Jackie, your absolutely right. With symptoms like this it is very difficult to get a diagnosis. Reading about your husband just made me feel so sad for what he is going through, and you too. I hope you know that I feel for everyone who has come to this forum for advise or help. I do need the encouragement. And I can relate to your neuro because this guy definitely went overboard when it came to joking about my symptoms, and when I mentioned serious ones, such as not being able to button a shirt, he ignored them.

Anna, the clinic said they would call me to give me the appt. for the EMG because they are also scheduling a sleep study.

I know everybody here is hurting in some way and there is a place in my heart and thoughts for each of you. Meg, I hope you are not upset. I thank all of you for being here for me. Leslie