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Discouraged and confused
I have been feeling pretty lost and confused over the past year, and I am wondering if anyone has been through this and finally got help. I am a 55 yo female and have been pretty healthy and active most of my life. A few years ago,in 2009, I experienced a huge emotional shock and a few days later broke out in a rash that was eventually diagnosed as a Celiac disease rash(auto-immune). I have a history of PCOS,(another auto immune) as well, that hasn't really been a big deal, since I was finally successful with my last pregnancy in 1990.
Since the Celiac diagnosis and going on a gluten free diet I have had no rash recurrences, but have developed some other issues. In 2012, I started experiencing terrible fatigue and pain in my legs, pain that kept me from sleeping. I saw my internist who diagnosed Fibromyalgia. She gave me trazadone for the sleep and said once I slept better the pain would disappear. I slept better the pain was still there and developed into weakness as well. She then put me on gabapentin, which helped with the spasms and pain somewhat, but they persist.
Since then the symptoms come and go, but this summer we moved to a very hot climate and I have had worsening of the symptoms as well as tingling in my scalp and face, my vision has gotten worse, new glasses prescription 6 months ago and I need another one, and pain in my left eye, as well as a spinning feeling and nausea.
Most discouraging is the cognitive issues. I often stop in the middle of a sentence and search for a word, and my memory seems affected. This is very discouraging as I am a PsyD student.
Sometimes I have trouble standing and walking without hobbling. This has been pretty frustrating as I have always been active, I actually still go to the gym daily as it temporarily helps with the leg cramping and pain, even though it often makes me nauseous.
I have had several doctors get discouraged and have not always been treated respectfully, which as I have been in medicine in one capacity or another for 30 years I find disheartening. I recently had a brain MRI and though the doctor who ordered it never called me he called a neurologist and asked them to call me and schedule an appointment. Imagine my anxiety when I heard from the neurologist's secretary not my physician. She said that my doctor said the MRI was normal. Still not sure what that means in the big picture.
Anyway, I have an appointment with the neurologist in a week and I am wondering how to approach it and what experiences others have had on the road to diagnosis or lack of it. Thanks so much,
Since the Celiac diagnosis and going on a gluten free diet I have had no rash recurrences, but have developed some other issues. In 2012, I started experiencing terrible fatigue and pain in my legs, pain that kept me from sleeping. I saw my internist who diagnosed Fibromyalgia. She gave me trazadone for the sleep and said once I slept better the pain would disappear. I slept better the pain was still there and developed into weakness as well. She then put me on gabapentin, which helped with the spasms and pain somewhat, but they persist.
Since then the symptoms come and go, but this summer we moved to a very hot climate and I have had worsening of the symptoms as well as tingling in my scalp and face, my vision has gotten worse, new glasses prescription 6 months ago and I need another one, and pain in my left eye, as well as a spinning feeling and nausea.
Most discouraging is the cognitive issues. I often stop in the middle of a sentence and search for a word, and my memory seems affected. This is very discouraging as I am a PsyD student.
Sometimes I have trouble standing and walking without hobbling. This has been pretty frustrating as I have always been active, I actually still go to the gym daily as it temporarily helps with the leg cramping and pain, even though it often makes me nauseous.
I have had several doctors get discouraged and have not always been treated respectfully, which as I have been in medicine in one capacity or another for 30 years I find disheartening. I recently had a brain MRI and though the doctor who ordered it never called me he called a neurologist and asked them to call me and schedule an appointment. Imagine my anxiety when I heard from the neurologist's secretary not my physician. She said that my doctor said the MRI was normal. Still not sure what that means in the big picture.
Anyway, I have an appointment with the neurologist in a week and I am wondering how to approach it and what experiences others have had on the road to diagnosis or lack of it. Thanks so much,
Laura has given you good advice. Let the doctor come up with a diagnosis.
If you have other recent tests, in addition to your MRI try and get copies of the results. Between now and the appointment try and piece together a symptom history. Write it all down and rank the in terms of impact on your quality of life.
When you meet with the doc, if/when the doc asks what's going on, focus on the top 3-4 symptoms on your list. If you try and go through every little itch you are likely to lose him/her.
Keep us posted.
Kyle
If you have other recent tests, in addition to your MRI try and get copies of the results. Between now and the appointment try and piece together a symptom history. Write it all down and rank the in terms of impact on your quality of life.
When you meet with the doc, if/when the doc asks what's going on, focus on the top 3-4 symptoms on your list. If you try and go through every little itch you are likely to lose him/her.
Keep us posted.
Kyle
I could have virtually written your story myself Phoenix, except that instead of diagnosed Celiac, I've got 'non Celiac gluten sensitivity'/possible gluten ataxia. I'm a few years younger too.
As of today I've had four MRI's with numerous lesions but not in the right places for MS and no new ones since the first MRI 13 months ago. At the moment I'm so sick I really do just want to curl up and die, no one has any answers and I don't know where to go next.
For now I'll just climb back into my bed and hopefully emerge when I feel somewhat better.
Poppy
As of today I've had four MRI's with numerous lesions but not in the right places for MS and no new ones since the first MRI 13 months ago. At the moment I'm so sick I really do just want to curl up and die, no one has any answers and I don't know where to go next.
For now I'll just climb back into my bed and hopefully emerge when I feel somewhat better.
Poppy
MY diagnosis was pretty smooth but I sure have heard some horror tales from others over the years. The best advice I can give you for when you meet with the neurologist, don't suggest any particular disease. Tell the doc you are there for answers and then let the doctor take the lead in questioning. If you say MS or any other disease, it immediately puts them into thinking you are shopping for a particular illness. Good luck - with this next step. It is encouraging that your doctor handed you off to an expert. Good luck and let us know how it goes, ok? Laura
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