Hi

I am a new member to this forum. I am a 50 year old female and have been having muscle weakness problems especially since the age of 25, but I can actually go back to giving birth to both my boys whom were both premature. One at 26 weeks and one at 30 weeks. I have had balance problems and shaky legs since I was 25, at the first onset I had a total loss of use of my legs and it was put down to being physcosymatic. (all in my mind). I have had periods since of shaky legs and hand locking. As time has progressed so have the symptoms. I have been diagnosed with fibromyalgia, but even my current family doctor doesn't agree that is what it is, the problem now is getting him to believe what I already know, and that is that I have myotonic dystrophy, I read like a text book for this disease, I have severe muscle pain, locking of hands, trouble under anaesthetic, cataracts, loss of hearing, cognitive problems, trouble speaking, sleep apnea, the list goes on and on, right now my doctor is working the racing heart problems, but because family doctors here in Ontario only work on one problem at a time I am not getting a diagnosis. My question is can anyone with this disease in the Ottawa area recommend a Neuromuscular doctor in the area that I can be referred to as I want to either confirm or deny my symptoms, I want a doctor that looks at the whole picture, and not each little piece of the whole puzzle. Can anyone out there help me with this.

Welcome to NeuroTalk:

Have you had genetic testing for Charcot Marie Tooth disease?

http://en.wikipedia.org/wiki/Charcot...3Tooth_disease

[QUOTE=mrsD;924425]Welcome to NeuroTalk:

Have you had genetic testing for Charcot Marie Tooth disease?



Thank you for another possibility.
No I have no genetic testing at this point, I am adopted and biological mother is not forthcoming with any medical information on her side, and will not list any information on biological father. My children both have some problems but it has always been put down to the fact that they were premature. I cannot get my family doctor off his behind need a neurologist.

Welcome KellyAnn,
I'm not sure what sort of health plan you have, but have you thought about looking online for neurologists elsewhere? With the symptoms you have, you should not have to wait to find a diagnosis. There are all kinds of problems that don't show up on "regular" tests and need deeper diagnostics to find out what is going on. Unfortunately, if no cause is seen, there are those that want to just label them as psychosomatic, as was done to you.

Looking can be frustrating, enraging and difficult when you already feel poorly. Do you have any support system? Friends or family who would be willing to help you look?

I understand your feelings. It took years to find someone to not only believe but treat my migraines. During that time, they worsened considerably. At emergency clinics, I was put off and given treatments I had previously had and knew they didn't work. One almost cost me my hand when a drug that clearly wasn't working was repeatedly given IV in the ER. As statistically migraines occur more in women then men, and all tests came up negative, no on would believe that the pain was constant and uncontrollable. You can't give up looking because you never know where you will find the answer.

Be very careful trying to compare your symptoms to syndromes or diseases that are written out. There can be several problems that someone's symptoms seem to fall into and it can be a trap. If you don't already, start a journal and record your symptoms day to day, what makes them worse, better or doesn't help. Keep copies of your medical records, (those are yours and you can ask for copies of them). That way, when you do go into a neurologist, you won't have to regurgitate your symptoms by memory, and it may save time, tests and that "shoot, I forgot to tell the Dr........". Somewhere in there may be the key that a Dr. will recognize. It will also help you go back days or weeks later and look for patterns. It also helps cut down the panic mode and look at it from the outside as opposed to being guided by the fear that accompanies neurologic/pain/weakness.

It would be nice if we could go into the Dr. and just tell them what tests we wanted done and why and get them, but we can't. Sometimes you have to be aggressive about what you are experiencing to get a Dr. to listen. They may not like your approach, but as long as you are insistant, not rude, but insistant, you will get further. The worst that can happen is that you are thought of as a "difficult patient", but would that really matter to you if you were able to finally get things done and Dr.s to listen?

Hang in there and keep looking. I'd say look out of country too, but I'm guessing that like most of us, your funds are limited. I know none of that answers the question you really want answered, but take it as support. There are some good people on this forum from different walks of life. Keep us informed.

Sam

Thank you Sam for the support, it is really nice to have a place where people actually care and listen. Since I live in Pembroke, ON Canada, my health care is basically the same as everyone else. My closest large city is Ottawa and I will be asking my doctor tomorrow for a referral to the Ottawa Civic Neurolgy department. It really sucks that our doctors in Ontario feel that they can only deal with one problem at a time, so someone like me slips between the cracks because they do not look at everything as a whole. In the last year my symptoms have become debilitating and hence why I have researched my own symptoms, I know I should not self diagnose but I felt I did not have a choice, at this time I just want a good neurologist to look at me and that gives them a place to start and either confirm or deny. I will write on here tomorrow to update the situation, and to let you know if my family doctor is taking me seriously as I have a couple of changes in the last 2 weeks.
Thanks again for the support, it may help to have a place to vent instead of just getting more frustrated and angry, which in turn just makes my symptoms worse.

KellyAnn,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Hi Everyone

I have a doctor's appointment today, am asking for a referral to a neurologist, wish me luck, I think I am going to need it. My Doctor only sees you for one thing at time, I always grew up thinking the body was all connected, I need someone to look at the whole picture. Hope everyone out there is having a good day.

Hi Everyone

I have a doctor's appointment today, and am asking for a referral to a Neurologist. Please wish me luck, I am hoping to convince my GP that I need a doctor who looks at me as a whole and can put all the puzzle pieces together and not just look at one piece of that puzzle. I hope everyone is having a good day.

Your PCP should be able to refer you to a neurologist. Also consider a physiatrist, who treats the "whole" person at a cellular level. They do look at the whole pictre. I wish you success. Be assertive, and do ask for what you need. ginnie

Well the doctor's appointment was a bit of a wash in the fact that I didn't get what I wanted, but I guess he made a bit of sense at the same time. I am so tired of being in pain, and having no energy to live my life. He says he understands but I doubt it, because he is not living it. He says he is going to start knocking things off my list one at a time, and see what we are left with, 14 years of knocking with different doctor's is driving me crazy. He put me on cymbalta, does anyone know anything about this drug. After 2 weeks he wants to add neurontin and then maybe either prednizone or lyrica after that. I hope this regimen works.