Finally diagnosed with multiple sclerosis in 1989. Is MS killing me? Is it like Lou Gehrig’s? Leukemia? One of Jerry’s kids am I?
I ask neurologist how MRI shows it’s MS. I don’t know what my brain is supposed to look like.
Sigh… Not going help you any to know that. Unforgettable that sigh. Call the MS Society. They’ll answer your questions.
Sucker punched, I remain calm. I ask another question. It’s not going to help you to know that either.
If you can’t cure me and won’t provide any information, why the fuck am I paying you hundreds of dollars?
***
Exit Stage Right.


Salon.com
Comments
Most docs are good people I know that, but yeah, just yeah. Some you just want to stare at in disbelief for their complete lack of compassion. Very frustrating, and obscene.
A few yards down the hall was a light board. Dr. Kastella put up the "pictures" and pointed out the brain lesions that are the typical hallmarks of MS. It required just a few minutes to explain that in almost all cases, MS is not a death sentence; that it is mostly a pain in the whatever -- more at some times than others. It was something I could handle.
I am doing pretty darn well, so don't worry about me. I've been living with and managing this entertaining thing called MS for nearly 26 years. Life is good.
Scanner: Thank you! It felt good once I got back in my car and settled down! I was proud that my voice remained calm. I was so shocked and insulted.
Julie: As a MS Advocate, I call people all over the country who have asked to speak with someone else who is living with MS. You wouldn't believe some of the stories I hear, even in 2010! One woman was experiencing terrible hand tremors and her doc yelled at her to "Stop that! Stop that right now!" -- as if scolding a frustrating toddler. Amazing.
Alicia: While I respect that a lot of what neurologists are trying to treat is invisible, not listening to patients is a crazy thing in my opinion. Patients still tell me they have spoken with doctors who insist there is no pain with MS. Wrong-O! How can they not know in spite of their education and all the information that is out there from the National MS Society and a plethora of other reliable sources? I just don't get it. (I haven't experienced pain in many years, but I certainly have experienced excruciating pain of different sorts with MS. Not good.)
Sheila and the Cap'n: Thanks for coming by and commenting!
Glad to read you found someone worthy of the title.
I'm sorry you have to contend with MS, but I'm very glad you found a good doctor who was willing to explain what things meant and how to manage your ailment.
Doctors who are too much scientist and not enough counselor can be brutal human beings.
Lezlie
I wish you the very best of health.
Your kindness and generosity of heart are to be admired, Natalie, just so much, love.
What do you call a medical student who graduates at the bottom of his class? Doctor.
Vanessa: It took me a while, but I did pay the bill. Grr... It's okay. I did find Dr. Kastella after that, who was intelligent, well-trained, up-to-date and caring. I also went to the National MS Society and to any other information resource I could find. Thanks.
Shiral; At the time I was diagnosed, there wasn't anything to treat MS; but these days there are several disease-modifying drugs on the market. The current drug I take is Copaxone. I went just two weeks shy of six years without a flare. Amazing! If you know anyone with MS, please tell them not to give up. Their life isn't over with MS, just different. Thanks for commenting!
Lezlie: I feel for your mom. I know I have had MS since at least age 19. Statistically, it seems that the younger a person is when he or she develops MS, the better off they tend to be over the long term. For example, at least 75% of people with MS remain ambulatory their whole lives, even if they use canes or scooters during attacks (flares, relapse, exacerbations or whatever you want to call them.) As they age, people may use aids to get around simply to conserve energy. A person with MS might use a scooter to go to the grocery store so she will have the energy to go to a party that evening for example. It is people like your mom, not diagnosed until she was in her 40s, that often have a rougher time of it. I send her a hug!
LunchLady: I still love my comeback too! :-) She deserved it. Thanks!
Bellweather: She may have learned her lesson. She may have gone on to the next patient and done the same thing. At least I let her know I had an issue.
Steve: I do NOT have a positive attitude! Oh. I guess I do. I can't seem to help it unless I am in a very strange situation like the one with that first doctor!
OM: Thank you so much. This open call turned out to be a way to present the topic of compassionate care! It is a topic that should be revisited now and again. :-)
LateThink: She didn't know what would help me and didn't seem to care. Granted, at the time there wasn't much available to MS patients, but even for those who do not take any of the disease-modifying therapies now available, most doctors know to advise patients to cut stress, eat a little better, exercise, get plenty of sleep -- and to listen to their bodies. Good advice for anyone, actually!
Thanks to everyone for your kind messages!
Maybe eventually some DRs just get desensitized to all of the bad/sad/not-so-good news they pass out over time :(. And by then, they're locked in, what other profession is there?
But I agree, some of them need to get out. Go somewhere. Else.
All-Best.
Rated.
Seer: I can see emergency-room personnel desensitizing themselves in order to survive, but a specialist of the type you see in private office visits for the most part? She was just not good at the human part of her job. I wanted some basic answers. She did not wish to give them. So what was I paying for? I would have asked more politely but...
Jonathan: Thanks for stopping in. Glad to hear your relative is doing okay with his MS. My attitude is to hope for the best but be prepared for the worst. Good advice for everyone, even people who are "healthy."
Thoth: The neuro was a woman. With her attitude, she probably went home and beat up her spouse! It was a long time ago, but obviously I have never forgotten that sigh. Thanks.
Jack: It seems everyone knows someone with MS, although the Inuit "Eskimos" seem to be immune (even with lack of daylight in winter, which = less vitamin D.) It is a mystery, but I know lots of people are working to find a cure including prevention. I am quite fortunate with how MS has treated me I think. Others not so lucky.
SweetFeet: Well I wanted to pack a punch the day I had that conversation with that bitch (sorry, but it is appropriate) of a neurologist, but one of my arms wasn't working at the time! I had to settle for slaying her with words. :-)
Matt: As my friend Dana says, "I feel you Dog!" Did I sound street tough? ;-) Thanks and back atcha.
Thanks.
Before undergoing this treatment a fast is recommended for 10 days or at least 5 days.During the fast unsweetened herbal teas may be consumed, avoid chamomile as it causes rag weed allergies and do not chew gum. Take 2 capsules of garlic twice a day and if you must eat try watermelon or uncooked apple sauce with the skin, laboratory grade Spirulina can be used as a protein supplement during the fast, if you have hyperglycemia a protein supplement must be employed. To prepare for the fast eat only raw vegetables and fruit for two days. While on the fast consume at least eight 8 ounce glass’s of steam distilled water a day , pure juices( no orange or tomato) and up to 2 cups of herbal tea per day. Green drinks made from green leafy vegetables may also be consumed. 3 carrots , 3 kale leaves ,2 stalks celery , 2 beats , 1 turnip , 1/4 pounds spinach , 1/2 head of cabbage , 1/4 bunch of parsley , 1/4 onion and 1/2 clove of garlic blended in a juicer or gently boiled in a pure vegetable broth this is an excellent substitute for the juices. When the fast is over consume only raw vegetables and fruit for two days.
After fasting : vitamin C 3,000 MG. per day, COQ10 50 MG. 3 times per day, Omega 3 ( essential fatty acids ), vitamin B complex 100 MG. & extra B1 50 MG. 3 times a day , garlic capsules 3 times per day, Choline & Inositol as directed on bottle, L Glycine 500 MG. 2 times a day, vitamin D 5,000 IU. daily, Potassium 300MG. per day , Selenium 100-300 MG. per day , Manganese 10 MG. per day. Herbs: start off with detox mix then incorporate Alfalfa and Turmeric 400 MG. 2 times daily. Eat only organic foods and begin the whole process when the moon is waxing.
Addict: Yes, I was scared, but after five years of wondering if I was crazy or might have a brain tumor, a diagnosis was actually, in a way, a relief. MS was something I could handle, you know? I will never forget that woman who was so cold when I wanted, needed and deserved at least some information. Brr...
Elizabeth: Snarky! Something I wrote came across as snarky! I love it! :-) Thanks for coming by and commenting!
She's tuff?
She suffer.
Bewilders.
`
I have a small copper tea pot I think I am saving for you. I picked in up after a Earthquake.
It just collects pollens.
Hearth dust particles.
You can put pot in tea.
Boil kale H20 in tea pot.
Steep kale in hot water.
Sip kale water. It' is tea.
Pot liquor is just greens.
You can sip hot pot teas.
It's a nice copper tea pot.
You love words and teas.
No smokes pot. No blog.
Art: I would love to have tea with you. Copper is pretty. Kale is good for you. I am taking Copaxone too. Have tried other DMTs. Copaxone is the one for me. If your daughter, I and so many other people have to have MS, now is a pretty good time. Some 15+ years ago, there were no therapies. Now we have choices, like we have in teas. May I have a cup please? xo