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Sammantha

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I want to say a quick hi to everyone and would really like some feedback on this question..... How many tests and how long did it take for you to get your diagnosis or to even see a neurologist........ I am finding that men go to the doctor and say their symptoms and get sent to a neuro right away, where as the woman say their symptoms and are told it is anxiety or a virus, then when outward signs appear they get into to see a specialist.....

If the men and womem would comment on their diagnosis ordeal i would greatly appreciate it, thank you.... sammantha
 

myooshka

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long road

Although I am not Dx I was sent to 5 neuro's. I had very brisk reflexes,clonus and they all told me anxiety, depression and then everything else blamed on preganancy. It was not untill my palms went completely flat and my fingers started to curl before I was taken seriously, now I am being sent to the head neuro in Calgary. When my son was born I couldt barely lift him my hands were so weak I had problems with diapers a neuro came to see me I couldn't even hold up my left arm when they did the strength test or squeeze his hand. I pointed out my fingers, hands. His report came back no more tests recomended my weakness was from depression. I was crying cause I could not pick up my baby. A physiotherapist came in to see me while in hospital, she could see right away that there was atrophy in my hands and that my muscle tone was abnormal, she urged me to seek another opinion out of hospital. Here I was not able to pick up my son and they came in and told me my problems were depression and tried to put me on Zoloft. It was just sickening. So long story short for me has been 14 months since first sypmtom, 5 neuro's and am now at the point I have housecleaners, don't drive, my hands are messed and my forerarms shrunk. This is how bad I had to get to have Dr admit that I have a serious problem. I found a great gp and that makes all the difference. It has been along road,it's tough because friends and family start to wonder when all these dr's say your fine. I know I am screwed, I don't need a doctor to tell me that. It's just putting a name to my sickness. To say the least for me has been a long tough,road. I told my husband I would fight for myself until the end. Just be strong, you know your body better than anyone.
 

ZenArcher

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I went to my GP in February this year, he noticed weakness and atrophy in my left hand. They got me in to see the neuro for an initial consult two weeks later. EMG was scheduled in late March and neuro told me it was MND. He the setup the appointment for the ALS clinic in Hershey. Went through all the blood work and second EMG April 12th, spinal tap April 26th and got the diagnosed May 9th.
 

brooksea

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Mya,

There is definitely a disparity of care between men and women regarding healthcare. This has been evident in the case of heart disease, for one, and is now being addressed with various campaigns for awareness.

Also, men tend to wait longer to seek help than women. But, having read your ordeal, it would seem the doctors were very negligent.

In my husband's case:

Went to GP in 08/06
Referred to Neuro 08/06
Neuro diagnosed 09/06
 

ilgal

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Hooray for women doctors

I am a woman and feel doctors' attention to my symptoms was quick.
In Aug 06 noticed speech slurring. Cardio had started me on new med for SVT so I asked him if it could cause slurred speech. Said doubtful and sent me for brain MRI which was clean. Primary care doc then sent me to neuro. By then I was having problems with rt hand weakness and emotional lability. In about Oct 06 that neurologist mis-diagnosed as small stroke. In 02/07 went to primary for regular annual exam and she said because speech and hand weakness were getting worse I should see another neuro. Took a while to get that appointment but the (woman) neurologist and her staff were wonderful. She did very thorough clinical exam, ordered tons of blood tests, and did EMG. She said she thought was MND (never said ALS) but said it is something she so rarely sees as a general neurologist that she wanted me to go to neuromuscular specialist. She got me into an MDA-ALS clinic. At the end of first visit in July 07 (clinical exam, more blood work, EMG) they tore up my co-pay check saying it would be covered by MDA which told me right then they thought ALS but needed to wait for test results. 2 weeks later my official diagnosis is "probable" ALS. I found out that the probable is because it's only in 2 regions now. But they're sure enough that I am being screened to be in a clinical trial (ceftriaxone). Just had my gall bladder removed because screening found gallstones. Also have to be tested for penicillin allergy which might exclude me. Am leaving for just-planned Alaskan cruise in 2 days and when I get back I'll find out about being in the study.
I truly appreciate the fact that my primary care provider (a PA-C) and the 2nd neuro didn't once trivialize my symptoms or try to put them off as stress/anxiety/depression. Both were women. Do you think that may have made a difference? I have always tried to go to women physicians when I have a choice. So my recommendations for women with symptoms would be go to a woman doctor and be referred to an ALS clinic.
 

Sammantha

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Newport
I am glad that you did not have to wait and stress for a long period of time but i am sorry that you got that diagnosis..... I think i should have known better, to get a different GP that is.. Everytime i saw him i always had a complaint of joint stiffness and pain... He would do bloodwork for arthritis and when it came back negative he would say "Your fine!" Three years and three blood tests, i guess he only knew arthritis and nothing else! Now i did not know what made joints stiffen or hurt so i just put up with it.... When i had my EMG it sounded like a boat/helicoptor about to take off the whole time the needle was in the muscle.... I know now this is associated with nueromyotonia and ALS.... I think my age is what confused doctors the most into never thinking anything neurological... I know that speech would definetly warn them that there is something either neurological or ENT going on.... I presented with fatigue/weakness/then muscle atrophy... Alot of conditions can cause this..... All of the local docs i saw where men, the first specialist i saw was a woman in a Rheumatology clinic, she was very thorough and knew my history from ten years previous...... The docs who took the time to examine me where the ones who knew for sure that i had something wrong... The rhuematology specialist was the one who sent me to neurology.

My sister in law and her family just went on an Alaskan cruise! They loved every minute of it, especially the kids...... Enjoy your Vacation!
 

CindyM

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I think we've had some men on this forum who were told their symptoms were due to anxiety but it probably does happen more often to women. Interesting point that men tend to wait longer before they go to a doc. If this is true, waiting would make them easier to DX, am I right?

We all know our bodies better than anyone else, so I always say we should keep seeking answers. The trick is how to remain calm while seeking. But as long as the symptoms keep coming or worsening then we have no reason to accept the DX of anxiety. We must keep looking until someone takes us seriously. Cindy
 
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