Help with some questions

[Placide]

Hello everyone. I am hoping someone here can answer a couple of questions for me or at least point me in the right direction. Dr. Google can give odd and conflicting answers so I thought I would go to the people who live with numerous symptoms everyday.

I should explain first that I live in an isolated mining town in Northern Canada and medical care here is very basic. We do have a hospital and up until October I had a family doctor, but he decided to move somewhere warmer (can't blame him) so now I'm on my own.

For the past couple of years I have been battling extreme fatigue and a very annoying intention tremor in my left hand. My doctor put it off as normal aging, approaching menopause, stress, etc. However, by August the tremors had moved to my head and neck and I could no longer raise my left arm above chest level. My doctor decided I had Parkinson's Disease and referred me to a neurologist.

I saw the neurologist in November (he flies in here twice a year to see patients and go skidooing). He ruled out Parkinson's since I did not have resting tremors and after two days of testing and going over my file he diagnosed me with possible multiple system atrophy (MSA). Along with the tremors I have left sided weakness, hyper reflexes in left arm and leg, spasticity and dystonia among other things. Since then I have developed major problems walking and have begun using a cane. I now need help dressing and have had to have a grab bar installed in my shower.

So here is my question. I asked the neuro if I could possibly have MS. He said no because MS does not present with tremor and weakness usually begins in the legs. I am sure at some point reading through the many online forums that I have read about people with MS that have intention and postural tremors. Am I correct? Also does MS never start with weakness in the arm?

Any help you can give me would be great. I did convince him to order an MRI of my head and C-spine which I had done in January. I don't see him again until April so it is a long time to wait for answers.

[Camsue]

Hello Placide

Welcome...sorry for your troubles...I would agree with your Doctor although I have read of people here with weak arms as one of their main symptoms. Stating "MS never starts with _____________" cannot be true because it is different in everyone. In my 30-40 years weak arms has not been one of my sxs.

As far as an MRI, I have learned that as we age we naturally develop lesions in our brains. My initial MRI in the 80's didn't lead to my diagnosis and my next MRI in 2010 showed 40? 60? 80? lesions.. Personally my sxs are less now than in the 80's.

I hope you receive a medication that diminishes your sxs and increases the quality of your life..

Take care

[Kimba22]

Hi Placide,

Welcome to MS World! I'm sorry to hear about your symptoms, and hope you will get some answers in April to what is causing them. I couldn't take living where it's so cold, and I certainly don't envy anyone who lives in an isolated area when in need of medical care! Oh my, no family dr. and a neuro who only flies in twice a year?! It's no wonder you have looked at Dr. Google! But, there are so many symptoms that will needlessly point you to MS there.

So here is my question. I asked the neuro if I could possibly have MS. He said no because MS does not present with tremor and weakness usually begins in the legs. I am sure at some point reading through the many online forums that I have read about people with MS that have intention and postural tremors. Am I correct? Also does MS never start with weakness in the arm?

The tremors and fatigue could be from MS, and it's possible to start with arm weakness. It's always possible you are one of those patients who presents with these symptoms. MS does not present the exact same way in any two individuals. But, you may not even have MS. I am glad that you had an MRI done. Hopefully, that will help point your neuro in the right direction to make a correct diagnosis for your symptoms. (I do hope it's not MS.) I do understand, though, how hard it must be to wait until April to learn the results!

Unfortunately, it's not as simple as just obtaining the results of an MRI for a definitive diagnosis of MS. Most patients are required to meet what is known as the McDonald criteria to be diagnosed with MS. If your doctor suspects MS, he'll order more tests to rule out any other possible causes for your symptoms. MS only gets diagnosed after the exclusion of other possibilities, although your doctor will have a better idea what things he can exclude after these tests.

Here's a few links for you from the National MS Society:
http://www.nationalmssociety.org/abo...mor/index.aspx
http://www.nationalmssociety.org/abo...-ms/index.aspx

Try to hang in there! In the meantime, live your life as best you can. There's nothing you can do about it until you learn more in April, anyway. (And do your best to stay away from Dr. Google )

Best wishes,

[aspen]

I have nothing new to add, but welcome from a fellow Canuck. I'm in Ontario .

Glad you were able to have the MRI done. It can be along wait even in less remote locations.

I am in limbo, have both arm and leg right side issues, but most of my trouble is in my arm (likely because it's my dominant hand so it's very noticeable).

Do you have physiotherapy available to you? I ask because after a session of weakness, I end up hurting my ulnar nerve or rotator cuff (can't lift arm up) and physio can help this. It's not really ms related, more secondary to weakness, if that makes sense. A physio assessment could help determine if this is what is going on, and in that case you could regain some movement. IF it's not this -- they can document for your neuro their opinion.

Sorry you are going through this but you will find lots of help here .

[gomer]

Good advice already....

Funny thing about Dr Goooooooooogle, He is not the GO TO doctor for doctors, Dr Wiki is the most used resource by real medical doctors. I had an issue a few years back and the Dr.....yep looked it up on............the web!

Anywhere you go on the web there is likely some miss-info, so BEWARE.

Gomer ......... Dr Gomer to U..........ha ha

[tspaulding]

So here is my question. I asked the neuro if I could possibly have MS. He said no because MS does not present with tremor and weakness usually begins in the legs.

I have had left eye problems since I was 9 and frequent urination since 16.

At age 21, back in 95, I had ON and was dx w/ MS after MRI showed 4 lesions.

I did not have any problems w/ weakness in my legs until eight yrs after my dx.

We are all different w/ our symptoms and the onset.

Hope your neuro can help w/ a dx soon, take care

[Placide]

Thank You

Thank you both for your help. What I'm really hoping to get from the MRI is something that is structural and fixable. I don't want to be diagnosed with MS or MSA or anything else. No one wants to be diagnosed with a disease that will end their life so I guess its normal to try and find other answers. Since my mobility has been greatly impaired I have too much time on my hands to worry about things that may never happen. I have had other tests to rule out other things. All require that I fly out of here at $1000 per trip so its getting expensive.

I have not told my family or friends about the MSA diagnosis because I didn't want to frighten them until the neuro was a bit more certain. Keeping it to myself for all of these months has been hard so I really appreciate finally being able to talk about it with someone.
Thank you for the links and advice. This forum is a great resource for information about nutrition and how to handle all these annoying symptoms like fatigue and dizziness. I am grateful to have found this site with so many knowledgeable and kind people. Thankfully I have no pain.

[Placide]

Thanks Aspen. Glad to here from a fellow Canadian. I am right side dominant but my weakness is on the left so at least I can still write and paint. I am on a wait list for physio but in the mean time I am seeing a wonderful chiropractor who is keeping me moving somewhat and giving advice and encouragement.
Nice to meet you Dr. Gomer. lol The web can certainly be a "web" of misinformation. Thanks for the advice.
Thanks tspaulding. It seems that there are many manifestations within the numerous diseases that I have been reading about and cross over symptoms as well. It's a wonder any of us can get a proper diagnosis.
Take care everyone.

[minnie76]

hi,

I'm from Ontario too. I too am in limbo. this is a great place to get support from people who are feeling similar issues.

I sure hope that if something was very wrong with the MRI, that the neuro wouldn't wait till the next time he was in your area to give you results. maybe you should call the neuro's office and ask how they process patients from out of town?

all the best,

Minnie76

[Placide]

Thanks Minnie76. That's a great idea. I will make the call on Monday morning.