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Old 04-27-2012, 09:36 PM   #1
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Finally some progress

So I had my appointment with the Physiatrist today, which I thought was for the ECG/NCV, but all he did was ask me questions, getting a history of symptoms, and testing strength and reflexes. He said that all my left side reflexes showed Hyperreflexia (sp?) and notable weakness in my left arm. He has ordered a whack of tests including:

- repeat bloodwork that is more specific (ESR, ANA, Protien Electrophoresis, RF, Lyme, and beleive it or not, West Nile)
- Vascular tests (Cartoid Doppler, Peripheral Arterial for Lower and Upper Extremities)
- Evoked Potentials (Triple Modality)
- Full body ECG and NCV
AND...
- MRI... Finally!


In 1 hour, he did more for me than my family doc. And as an ALS specialist, he has ruled that out!

Last edited by GunnersMama01; 04-27-2012 at 09:41 PM.

 
Old 04-28-2012, 04:39 AM   #2
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Re: Finally some progress

Hi there. Im really happy that you made some progress! One thing I wanted to note though,
a physiatrist cannot be an ALS specialist.. A physiatrist is a physical medicine and rehab doctor. Not that they arent qualified to help you.....they certainly are MDs and can order any test or perscription they want- but they definately do not specialize in MS or ALS.
Physiatry is the study of injuries and illness which affect how one moves...which is why 99% of physiatrists work in rehabilitation centers.

Although it sounds like he is ordering you some good tests, it also sounds like he is putting you thru an awful lot of tests which are both painful and time consuming- and what will he do with the information? He isnt qualified to be your doctor if you have MS or ALS. You will need a specialist. How did he order the MRI by the way? Was it ordered with MS protocol? With and without contrast on the brain and Cspine? And why a full body NCV and ECG? Did he explain to you what he is looking for? Why not just do the hands and feet?
I dont want to take you down. You sound happy and IM happy for you- I realize that this much attention has to be better than what you have been getting, and thats definately a good thing, but please, be aware that a physiatrist just isnt qualifiied to diagnose or rule out a neurological disease.
Nikki
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Old 04-28-2012, 07:05 AM   #3
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Re: Finally some progress

While I must agree that your doctor is not an MS Specialist, I must congratulate you on being blessed with a doctor who is moving you along. Sometime we have to take our blessings where we can find them. Some symptoms of MS which may seem like muscle problems in the back can actually be cardio problems in women. I think it is good to get some of these tests out of the way and hopefully you will be able to get answers.

If you can, please have copies of your tests sent to an MS Specialist for follow-up.

Again, I am happy you are feeling happy!
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Old 04-28-2012, 10:14 AM   #4
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Re: Finally some progress

Thank you both for your replies!
I guess I shouldn't have said specialist. This Dr. runs an ALS clinic out of Sunnybrook Hospital in Toronto, which is part of the University Health Network, and has worked with patients for a long time.
Maybe him saying "ruling out" is just his opinion?
The MRI requisition was sent to St. Micheals Hospital, where there are MS Specialists and a clinic (Dr. Paul O'Connor is Chief, Division of Neurology and leader in MS neurology in Canada for more than 20 years) . I did not see the req form, so I will ask when they call for the appt. He the full body ECG/NCV was being ordered because although most of the symptoms seem to be on the left, the issue with my right leg a few days ago puzzled him. He just wants to be thorough i guess. The way he put it is he would like to determine what type of specialist's care I should be put under, as it doesn't seem as if my family doc is properly handeling my case.
Nikki - I don't take any feedback, opinions or comments on here as negative, or knocking me down! This is after all, an area you are familiar with

 
Old 04-28-2012, 10:37 AM   #5
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Re: Finally some progress

Hey Mama,
Im glad you are open to comments, thats all they are supposed to be.

Jayhawk is right, we do have to look at any blessings we can find- and liking your doctor and feeling that things are moving forward, is definately a blessing. On this board are too many people who just arent getting any answers and their frustration is loud and clear.

Now that you have explained how it all works and why its going the way it is, it makes sense! ALS, is an easy disease to rule out....the testing is pretty straight forward, so if he ruled it out, its probably RULED OUT! YEAH!!!!

as far as what happens next, sounds like you are proceeding in the right direction and will get answers from people who are qualified to give them to you. I would agree, your family doctor doesnt seem to be handling this properly and its not really their fault. Family docs arent trained in any of this...and although a pysiatrist isnt really qualified to treat any of these chronic diseases, they certainly can write for tests and accumulate information. So, if you are happy with the fact that the tests are being ordered and eventually someone will point you towards the right specialty, then Im happy for you. Its defintately a step in the right direction!

Please let us know how the testing goes and what the results are...
Nikki
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Old 04-28-2012, 11:00 AM   #6
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Re: Finally some progress

At the MS Clinic I use, ALS is one of the first tests they perform because it can be easily determined. This is important because of the facts of life expectancy for MS. Also, blood tests early on can determine if there are nutritional deficiencies causing problems.

There is nothing wrong with a non-MS Specialist if they have the capability to determine MS in a patient. I have met some extremely good family practice docs who were quite capable of diagnosing MS. It looks like you are in the right location because referrals can get you through many closed doors!

Take one day at a time. Limbo land need not be lonely, it does, however, require patience! Stay strong!
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Old 07-13-2012, 07:48 AM   #7
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Re: Finally some progress

UPDATE:
All the test run came back "normal" The MRI was only of my head, and without contrast. I am still waiting for the EMG/NCV. I have been referred to the Neuro and my appointment is in October.

Over the past few weeks, new things have been happening.

-My left hand went numb again, but this time it only lasted 3 days
- I have developed a slight tremor in my right hand. I think it is postural?
- my right thigh and forearm have been aching again non stop. It feels like when you over-exercise, super tight and stiff
-the A/C at work was down last week during the heatwave and the fatigue was hitting me HARD. My left side (arm and leg) felt super heavy, but gradually got better once in the air conditioned car and house.
-have been more dizzy/lightheaded than what is normal for me!

And so the waiting game continues.

 
Old 07-13-2012, 08:45 AM   #8
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Re: Finally some progress

Hi Gunner's Mama,

I'm following your posts with interest, as I'm in Eastern Canada. I know that there's an MS clinic in NS, but if I am diagnosed, my employer will send me elsewhere if needed. Please post how you make out at St. Michael's.

Good luck,
Gully

 
Old 07-13-2012, 09:38 AM   #9
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Re: Finally some progress

Thanks Gully! I have been reading your posts as well. It seems we have a few symptoms in common!
As I mentioned in another post re: hip pain, it now seems as though it was actually one of my first symptoms. When my husband broke his back, I was driving over 500 kms a day, as his dad was in a hospital in a different city at the same time. (If you are familiar with Ontario at all, I was driving from Little Britain, to Oshawa, to Kingston, back to Little Britain every day for 2 weeks.)
I thought the hip/thigh pain was just from sitting too long and cutting off circulation, but it is still happening, and all my vascular tests are fine!

 
Old 07-13-2012, 10:47 AM   #10
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Re: Finally some progress

I experience some 10/10 hip pain. My only relief is to either stand or to use a heating pad. Nowadays at the first hint of pain, I will use the heating pad. It melts away the pain. I have an adapter for my truck too and I will use it in my truck if hip pain hits when I am driving. Mine is definitely MS related.
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Old 07-14-2012, 05:48 AM   #11
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Re: Finally some progress

Love these boards!
Gunner'smama - I'm not very familiar with Ontario other than the drive to Ottawa and the flight to Toronto but I drive a lot also with my work. That seems to be what makes the hip pain worse. When this all started in April '11, the chest pain was first, then within days the hip pain started and went all the way to my toes. In the hospital, obviously the biggest concern at the time was the chest pain, but I kept saying that my chest wasn't as bad as my leg! I was finally given morphine (if I remember correctly) for it.

The neuro-ophtalmologist I'm waiting to see is Chuck Maxner in Halifax. I've heard really good things about him, so my fingers are crossed that I'll get some answers. My fingers are crossed for you as well.

Keep posting,
Gully

 
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