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Questions about symptoms--help?
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An_257989 posted:
Hello
I am 45 years old and have been having some weird symptoms for a long time now. They come and go in spurts and I am one to deal with things, ignore them, cope with them, etc. Lately though, I can't ignore it any longer. I have a physical this Wednesday with a primary I never chose. I am not confident with her but right now, she's all I have. For years I thought I had lupus as I would suffer terrible fatigue and ill feeling after being in the summer sun. I live in MA. I would have pain and weakness and a general ill feeling. Well, I went to an endo and my ANA is negative and has been repeatedly. So my condition is a mystery. I am known as the annoying family member because I can't tolerate heat in any way. I truly feel like I will pass out and I start to panic when it gets too hot. I have an expensive sun umbrella and people around me know me for my shade existence and indoor life when it gets hot. In fact, the way most people get depressed in the fall, I feel that way in the spring because I know it's going to get warm and miserable for me. Sorry for all that background. My symptoms now are muscle weakness in my arms and hands and legs. I have fallen twice in the last year with nothing on the ground to make me fall. My vision is so blurry that it stresses me out. I have pain in my muscles. The muscles twitch and spasm and I feel like almost tremor. I have difficulty emptying my bladder (sorry) I have bouts of everything I just mentioned being worse with forgetfulness and mood swings. Other times I am doing ok with residual twitching and weakness staying around. Could this be anything else other than ms? I am sure I have more symptoms that what I have mentioned but I can't remember everything anymore. I should write it down for the appointment I think. Any help or guidance or answers would be so appreciated. Thank you so much.
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hackwriter responded:
Hello,

Your symptoms could be caused by any number of medical conditions. No one on a health forum, including a doctor, can possibly point you in one direction to investigate.

It's good that you will see a PCP this week. Make a symptom log, write down as many things as you can recall and for how long you've experienced them. It's a doctor's responsibility to listen to your history, examine you, and start investigating causes by ordering various tests.

The thing with autoimmune disorders is that they are often diagnoses of exclusion. Try not to diagnose yourself as you seem to have done with lupus. With all the differential diagnoses, it's tough enough for doctors to solve the mystery. You can help them by being thorough in your documentation of symptoms, and reporting new symptoms and making an appt. to see the doctor.

In the case of MS, there is no one definitive test. Diagnostic tests are ordered by a neurologist and include brain and spine MRIs, a neurologic exam to test strength, coordination, balance, vision, and sensation, evoked potentials that measure the speed of electrical signals that travel from the eyes and ears to the brain, and a lumbar puncture that checks the spinal fluid for inflammation. Blood tests will rule out diabetes and other things, MRIs will rule out stroke, tumors, spine disease, adrenal conditions, etc. An EMG will rule out peripheral nerve damage.

I hope you will let us know the outcome of your Wednesday appt. Do keep us updated on your progress. I hope it isn't MS, but if it is, know that you have lots of resources for support and info here and elsewhere on the internet. Good luck.

Kim
 
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mellyanne replied to hackwriter's response:
First of all, if the first thing you want to say to me is that I have done something wrong asking for advice and that no one on a health forum can POSSIBLY point me in the right direction, then why reply at all? If you are on this site and you have been ill at any point in your life then you know how devastating it can be for some stranger on the internet to lecture you and try to make you feel bad when it took all you had to reach out in the first place. I cannot even believe I was so happy to see there was a reply and then how shocked I was to read it. I DID NOT diagnose myself with Lupus at any point in my life. I said I thought I had it as my symptoms were weird. It was a stream of consciousness..THAT"S ALL. I saw a Rheumatologist (I incorrectly said endo) for my symptoms and she concluded I did not have lupus. That is irrelevant to my story. I did go to the doctor today and she ordered an MRI of my brain as well as several other tests. If this is the "support" that is available here, this is obviously not the site for me.
 
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jules1202 replied to mellyanne's response:
I am sorry if you did not find Kim's reply supportive but I read it twice and did not find it rude??

Kim's point I believe was to give you some wise advice without playing pretend dr or steering you down a rabbit hole of one possible condition or idea that can lead to you being frustrated and confused.

As Kim suggested document, document, document your medical history. And if you are concerned about MS, you should definitely go see a neurologist as they specilize in that area. It is great that your dr. is ordering an MRI (are they doing the cervical along with the brain?) Also if you are having blurry vision I would go see an eye doctor if you haven't already as they can sometimes detect optic nerve damage if that is causing the blurriness issue. Good luck with your MRI!
 
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mellyanne replied to jules1202's response:
She ordered just the brain and not cervical. She is trying to cover a lot of bases. For example, for the falls, she is checking my heart in case I passed out and fell so I will be having an echo-cardiogram. For the bladder difficulties, I'm having a bladder and kidney ultrasound. She also referred me to an ophthalmologist whom I will see in a couple of weeks. She did blood and urine tests which have come back already and they are normal. She is doing all she can to find out what's wrong with me. NO ONE IS PLAYING PRETEND DOCTOR. I have no idea why you're perpetuating what "Kim" said to me. I came here for discussion. For talking. For sharing. You know....maybe something like, "Yeah I had those symptoms or no I never had that" etc. I was looking for personal experiences to make me feel better. I feel safe in saying that no one would want to be lectured for something they weren't even doing. I clearly stated in my post I was going to a doctor and I have since gone. So offensive. I give up.
 
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jules1202 replied to mellyanne's response:
The problem is that yes, some of those can be symptoms of MS but they can also be symptoms of ALOT of other conditions also. That is the stinky part of it. No two people's exerperiences are the same and there can be a person that I would swear their symptomes sounds exactly like MS to me but it turns out they actually have lyme disease or a B vitamin deficiency or fibromyalgia or even diabetes (which causes eye issues and nerve damage), etc. It may sound nice at the moment but someone who has never met you and will try to help diagnose what you have based on one conversation when the medical condition in question is so murky to diagnose.... well that wouldn't be fair to you.
Short example - You could have the strep throat and say "I feel totally run down and have a fever and a sore throat" and someone could read that and respond - "that is exactly how it was when I had the flu" (it would be true but would lead you to possibly think you needed different treatment that you did).
Bladder issues, coordination issues, blurry vision can be MS symtoms as you know. Hopefully that isn't what is causing your issues. Hopefully its something much more simple and easy to fix. No one around this place would wish MS on anyone.
If you are having issues of falling and possibly numbness and coordination issues, I really encourage you to get a referral to a neurologist who specializes in conditions like MS. Primary dr's are good people but they can only do so much. I would try to get a cervical MRI along with a brain since if it were MS, often lesions can be located on the cervical area and not just the brain. Also there are other issues that can cause numbness and coordiation issues that could present in the cervical area.
Since you say you give up and apprently we have unintentionally frustrated you, I will wish you the best of luck and hope they can get your problems figured out and get you back to 100%!


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