A little medical advice, please...

[jazzbo]

Just found this thread too, and have nothing to add except that I'll be thinking about all of you, and hoping for the best, and I counsel as much patience as possible. My wife was ill for several years before there was a proper diagnosis and treatment; I know that there is little comparison between her case and your wife's, your wife's condition is going to be found and treated much earlier, but I do know the value of patience.

[John B]

The best advice I can give to you is to be a pain in the ass. As someone else posted, make the doctor communicate with you. They don't always appreciate that, but it is always in the patient's best interest to be as well informed as possible. Also, the suggestion to call you insurance company is a sound one. Beyond understanding what your benefits are they have nurse case managers on staff who can help negotiate the multiple specialists you might have to visit. They might also be able to help you choose another doctor should the one you are seeing be not helpful / communicative.

Not knowing your specific HMO or Alison's specific condition there isn't a lot more I can think of at this time.

I work for a health insurance company so, if you ever want my opinion on how to best utilize the resources you might have available to you let me know. I'll send you a PM with my phone #.

[Craig23]

Actually I did do a google search and found a post from some woman on a forum that described almost the exact same scenario my wife experienced.  Check it out:

http://neuro-www.mgh.harvard.edu/forum_2/G...p--Doctors.html

I mean, that's almost exactly what happened and is happening to my wife.  She mentions that one neurologist thought it might be a vitamin B deficiency (iron).  My wife was anemic during her pregnancy until she started taking an iron supplement.  Maybe she should start up again.

One of the replies to that message mentions the dental work idea as well.  So who knows?

So far it seems it could be four things:  MS, a pinched nerve or out of place vertebrae, iron deficiency, or metal poisoning.  Of course it could be none of these things.

You may want to contact the Department of Neurology at Massachusetts General Hospital (they are the group that hosts the forum to which you linked). Perhaps they have contact information for the person who posted her symptoms. She posted the symptoms about 4 or 5 years ago so I imagine she has received a diagnosis by now. Its a long shot but it may be worth a try.

My thoughts are with you as well.

[Guy Berger]

Jim,

I hope everything turns out alright. Keep us posted.

Best wishes,

Guy

[mgraham333]

Jim:

I wish you and your wife a quick resolution to this unfortunate situation. The only thing I might add is keep a diary. Document everything. Wake time, sleep time, all meals (time and content), the time and duration of any dizzy spells, the circumstances surround them, pretty much everything.

If you can get a doc to listen, having this information might help.

Best wishes,

Matt

[Jim Alfredson]

Just a little update. We went to the MSU Neurology Department this morning and talked to the woman there in charge of referrals. The hospital had not contacted MSU about my wife, which is just fantastic. The woman was very concerned and apologetic and assured us that she would get us in very soon but she had to get a hold of Alison's records first. We should hear from her later today.

Meanwhile, Alison's co-worker/mentor called just as we got home and it turns out she is good personal friends with Dr. McCoy (insert joke here) one of the doctors at Sparrow hospital that saw Alison and admitted her on Monday. She told Alison that she would call McCoy's wife and find out where he is and get him to call us, since Alison's symptoms are worsening. The numbness has moved into her lips, her tongue, and her chin and are spreading across her face into the right side. Also her left leg is starting to feel awkward.

We may have to go back to the emergency room, although that seems pointless. Hopefully Dr. McCoy will call soon. We are also going to call her primary care physician and let him know about the worsening symptoms.

[Leeway]

I hope nobody minds but I thought a prayer for the sick would be a good thing:

O God, in our hearts, we name those who are facing illness and pain. We join our prayers with the prayers of all who love them. Give them renewed comfort and courage. Strengthen in them the healing powers You have placed within us all. Guide the hands and hearts of those who are entrusted with their care. May the knowledge of Your love and ours give added hope to them and to their dear ones. May they find even greater strength because our prayers are linked with theirs.

[Noj]

I echo all of the above sentiments with good thoughts and hopes for the best for you and Alison, Jim.

[Dan Gould]

Jim,

I hope you are lighting a fire under the collective asses of the incompetents who told you to go to MSU but didn't bother to let them know of the referral. Outrageous!

I presume MSU knows that her symptoms are worse-hopefully that will mean a very quick appointment. As far as the emergency room goes, I would see what this original doctor thinks when he learns about the worsening symptoms.

In addition to Leeways prayer, sending positive vibes to you both!

[Jim Alfredson]

We're going back to the ER.

[catesta]

The best advice I can give to you is to be a pain in the ass. As someone else posted, make the doctor communicate with you. They don't always appreciate that, but it is always in the patient's best interest to be as well informed as possible.

For sure.

Jim, like everyone else here, I hope it all works out and hope the best for your wife and you.

[Man with the Golden Arm]

My thoughts are with you as well, Jim.

[Soul Stream]

Sorry to hear about this Jim.

Do you and/or your wife have parents or older siblings that can get involved? Sometimes older folks can apply more pressure on the powers that be.

Otherwise, be relentless. Don't rely on the medical community to take care of your wife. Sadly, that's up to you these days.

Good luck.

[JSngry]

We're going back to the ER.

Be strong, bro.

[neveronfriday]

Sent you a PM.

Tons of best wishes from this side of the Atlantic.

[DrJ]

Another board member brought this thread to my attention this AM, sorry that I hadn't seen it before.

1) One important point first: ABSOLUTELY go back to the doctor and do not leave until a) they give you reasonable time to ask questions and answer them and share their thinking and b) you get a clear idea of what the follow-up plan (including time frame) is going to be. With progressing symptoms, it's very important.

I'm hugely, hugely dismayed to read the overall terrible impressions of physicians, no doubt many of them "well-earned" by the doctors in question. It's an embarrassment to the whole profession that there are still physicians out there who seem to go out of their way to make people feel like they are stupid for asking questions and who are incapable of communicating and sharing information.

I hope everyone realizes that medicine is still more art than science. There are many cases where the diagnosis is not clear initially, and the workup so far actually seems reasonable in terms of the technical tests. The part of this case that's inexcusable though is the horrible way you and your family are being treated as people. In a case like this, where the diagnosis is not clear cut at first and there is going to be a need for follow-up and cooperation over time, it's just horrible, horrible medical practice to communicate that poorly, as well as rude and obnoxious. Man, honestly I haven't felt this low on a Monday morning in a long, long time. To see the actions of these assholes lead to people making sweeping and terrible generalizations about "the medical community" is so demoralizing.

So, definitely, find another group of doctors to work with if at all possible.

And as an aside to everyone: please don't let the actions of some of my moronic colleagues lead you to believe that nobody in medicine cares. A lot of us do, deeply.

2) I'm a generalist and so work up this type of symptom all the time and the differential diagnosis is vast. There's no way anyone can make a diagnosis without access to all the tests, doing a full physical exam, taking a careful history, etc. So I won't try and do that. But I would like to make a few general medical observations:

- I'm not sure what on earth the test the chiropractor did was but it's not a standard physical diagnostic test. In fact I hate to say it but it sounds very dangerous - you NEVER want to provoke what could be the symptoms of circulatory blockage on an exam, if it truly for example is a problem with a carotid artery that could actually CAUSE a full fledged stroke. I'd stay clear. Some chiropractors are reasonable and stay within the bounds of the discipline, others are truly awful (just like MDs can be great or terrible).

- Neck vessel ultrasounds ALWAYS include the internal carotids, in fact nobody really pays much attention to the externals because they really aren't usually associated with much significant pathology. However, the ultrasound is looking for fixed blockage, like plaque build up from high cholesterol. So a "normal" study doesn't rule out some other things. For example, if there is indeed a problem with compression from the outside of the vessel related to different head positions, then it might not show up at all on a static ultrasound. That can be diagnosed other ways, but hopefully a LOT more carefully than the chiropractor did it. It would however be extremely rare for someone in your wife's age range to have a carotid artery compression problem just show up all of a sudden, it just doesn't make sense. If you torque someone's neck hard enough, which puts traction on the cervical nerve roots, you can elicit just about any neurologic symptom, but that's not really the issue.

BTW BOTH the internal carotid artery AND vertebral artery supply the brain, just supply different parts (vertebral goes to the "posterior circulation" and the carotid branches elsewhere). A vertebral artery problem COULD cause her symptoms but again I can't for the life of me figure out why it would just come on all of a sudden at rest. It just doesn't fit well, but they can ultrasound the vertebral arteries, too.

- IF they can in fact rule out post-partum stroke, that would be the most likely circulatory thing in someone of her demographic and everything else becomes quite uncommon (vasculitis or inflammation of the blood vessels in the brain, for example). However, with her current symptoms I'm still not sure at all they have ruled ALL circulatory issues out - that's why the follow-up and re-evaluation you're arranging is so important.

- About scanning - The "spot" on the MRI is all too common - this is why I continually have to explain to paitents that just ordering every test known to man for every symptom is a dangerous, dangerous game. Many like MRI end up showing what we call "incidentalomas" - little spots that don't have any medical consequence but freak people out and, worse, get us all down the wrong diagnostic path. I'm not saying that's the case here, might turn out to be important, but not at all unusual to have a "not fully normal" MRI that still has absolutely no important clinical ramifications.

- Anyway, I believe neurologists were focusing on neurologic things like MS, which can occur in any age range and present very suddenly and abruptly and yet have relatively normal diagnostic testing because the circulatory problems are more rare and usually would have shown up on her initial testing. Still a re-scan can sometimes show the abnormality clearly even when the first didn't, so again follow-up is critical.

- There are a lot of things that I can't fit in with others - for example, the bloodshot eye, that just doesn't really fit with anything unless her blood pressure was sky high and she had a subconjunctival hemorrhage AND a stroke at the same time. But that would be so rare. I wonder, has any type of rash developed on the face area that is numb? Shingles is "a great imitator" and before the rash pops up often all you get is numbness in the nerve root distribution affected. The eye region of the face is commonly a site for shingles and that COULD give you a red eye as the conjunctiva (lining of the eye) is often affected. It could also POSSIBLY radiate down the arm although again that doesn't fit well as it's a different nerve root distribution...so I'm quite stumped and again I am glad you are going back to some other doctors, definitely they need to lay on hands etc.

- I don't think vitamin deficiencies etc are the way to look - those things cause insidious, gradual onset symptoms, not sudden things like your wife's. Others are asking questions about aneurysm, seizures, and those are the things I'd think of first (in addition to those listed above) given the symptoms and sudden onset. Aneurysm should have showed up on the MRI, though. Seizures can also be a "great imitator" and hard to diagnose, but EEGs and other things can help.

- I am so, so sorry all this is happening. My thoughts are with you and yours as you work through all this.

Edited November 15, 2004 by DrJ

[White Lightning]

Just caught up with this thread.

Jim, my thoughts are with you. Hopefully those positive vibes I'm sending will reach you over the Atlantic.

[Joe G]

And as an aside to everyone: please don't let the actions of some of my moronic colleagues lead you to believe that nobody in medicine cares. A lot of us do, deeply.

My wife has a serious chronic condition, and so we've been dealing with the medical community on a regular basis for quite a few years (she, pretty much all her life, me for the last 14 years). There are good ones and bad ones and everything in between, as in any field. Several doctors and nurses have gone way out of their way to help us, and I think on the average most of the professionals we've met are doing it for the right reasons.

[Stefan Wood]

I just saw this thread. My prayers to you all.

[Aggie87]

Indeed, my thoughts and prayers are with you, your wife, and Zora as well. Stay strong!

[Jim Alfredson]

Thanks, DrJ for your insight. After we decided to go to the ER this morning we were waiting for my sister to arrive to care for Zora and the MSU Neurology Department called. The woman we talked to in person was on the line and got us an appointment for tomorrow at 4pm. So we decided not to go to the ER, since there isn't much they can do.

We called our general practioner's office and they informed us that the spinal cord MRI that they wanted to have done this week is being held up by the insurance company. It seems the insurance company wants to know why it's necessary. I love that some huge comglomerate that resides in God-knows-where that doesn't know my wife from the number that represents her decides, over doctor's orders, what tests should be run. Quite the health care system we have in this country, eh?

Anyway, hopefully the visit tomorrow will provide some answers. DrJ, the test that the chiropracter did was standard fare, according to my sister who is a physical therapist. She says that PTs perform the same test and if they get a positive, that's as far as they go, which is exactly what the chiropracter did.

My sister seems to think that the fall down the stairs may have injured something around the C2 vertebrae and that my wife's dental work a week before these symptoms started, whereupon she sat in the dentist's chair with her neck extended for a long period of time, aggravated the injury and helped bring on these symptoms. She called it a "subluxation of the C2 vertebrae". Does this sound plausable?

I hope to get more answers tomorrow. Thanks to everyone for the concern.

[ralphie_boy]

My thoughts are with you - I'm sure everything will turn out ok.

[Jim Alfredson]

Well finally some good news. The insurance company (Blue Cross/Blue Shield) just called and approved a spinal cord MRI for the cervical portion of the spine and gave us an appointment for this Friday. If the doctor we see tomorrow wants to scan other parts of the spine (which doesn't seem necessary, but who knows?) then they will approve that if need be.

Phew. That's good to hear.

[skeith]

I wish your wife all the best.

[doubleM]

You guys are in my thoughts. It sounds frustrating waiting for calls from these people!!!