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Misdiagnosis ...


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Old 11-07-2018, 07:01 PM   #1
donnam7
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Unhappy Misdiagnosis ...

Over the past year and a half, I have been struggling with chronic leg pain. It started in my calves as an aching, throbbing, cramping sensation. I immediately thought blood clot. I wound up going to my primary who did not think it was a blood clot, so she sent me home. A few days later, went to urgent care and the doctor there told me she thought it was a pulmonary embolism and sent me to the emergency room. They ran a d-dimer test which came back negative as well as my chest x-ray. No clots. The ER doctor prescribed me an anxiolytic to help with the anxiety that caused chest pain causing the urgent care doctor to think it was a PE.

Fast-forward to a few months ago. The pain persisted, even worsened, and other symptoms began to pop up. I now experience pain in my thighs more than my calves and also experience stiff joints, occasional swelling in lower legs/ankles, chronic fatigue, light sensitivity, mouth ulcers, frequent urination that sometimes seems to have quite a bit of foam in it (sorry for the TMI), and extremely high levels of anxiety and depression. I went back to my PCP who ran some more labs - minerals and other general labs including calcium and magnesium. All came back normal except for my vitamin D which was a bit low, so she prescribed me a supplement. After those labs came back normal, I urged her to keep digging only because I know that my body should not feel this way. She ran more in depth labs (Lyme, creatine kinase, ANA, etc.). My labs all came back normal with the exception of my creatine kinase levels which came back at around 500. She referred me to a rheumatologist and to undergo an EMG.

I had my EMG and nerve conduction study which all came back normal. I then went to the rheumatologist who ran some more labs testing me for RA and other vitamin deficiencies which came back normal as well. Did a physical exam and slapped a fibromyalgia diagnosis on it. She prescribed me Baclofen for the pain which honestly doesn't do very much for me. I take it in conjunction with Gabapentin which sometimes seems to help, but I know that is helping with my sciatica, not the muscle pain. I know this is not fibro. My mom has fibro which is a widespread pain. This pain is localized to my legs.

Does anyone have any idea what this could be? My ANAs came back negative so I know it's definitely not Lupus. I have not had any imaging done such as an MRI or anything like that. I'm 25 years old and I feel so discouraged at this point. I never want to go out because I am always in pain. I don't sleep well because my legs are bothering me 9 times out of 10 and prevent me from falling asleep and/or staying asleep.

 
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Old 11-08-2018, 08:30 AM   #2
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Re: Misdiagnosis ...

In your first paragraph you mentioned that it started in your calves as "an aching, throbbing, cramping sensation." There is a rare condition called "Cramp-fasciculation syndrome" (CFS). It's characterized by twitching, and cramping which may lead to muscle pain. I realize you didn't mention twitching but otherwise it seems somewhat close to what you said. Other parts of the body can be affected but it most commonly involves muscles in the legs.

Perhaps your doctor has already ruled this out? If it hasn't been ruled out, it might be a good idea to ask about it.

Last edited by JohnR41; 11-08-2018 at 08:38 AM.

 
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Old 11-08-2018, 02:52 PM   #3
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Re: Misdiagnosis ...

Thank you so much. I read more about CFS and it sounds almost exactly what I've been going through. I have never heard of it before and none of my doctors have ever mentioned it. I have an appointment with my rheumatologist next week so I will be sure to mention it to her.

 
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Old 11-14-2018, 07:15 PM   #4
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Re: Misdiagnosis ...

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Originally Posted by JohnR41 View Post
In your first paragraph you mentioned that it started in your calves as "an aching, throbbing, cramping sensation." There is a rare condition called "Cramp-fasciculation syndrome" (CFS). It's characterized by twitching, and cramping which may lead to muscle pain. I realize you didn't mention twitching but otherwise it seems somewhat close to what you said. Other parts of the body can be affected but it most commonly involves muscles in the legs.

Perhaps your doctor has already ruled this out? If it hasn't been ruled out, it might be a good idea to ask about it.
Unfortunately I went to the rheumatologist today and she did not think it was CFS due to the fact that my EMG came back normal. I have scheduled an appointment with a neurologist on 11/26 so hopefully I will find more answers from him.

I did however talk more with the rheumatologist today about the sensations that I feel with my legs and muscles. She asked if my legs ever fall asleep and I told her that when I'm sitting, say while using the restroom, my legs will fall asleep within a few minutes. Which concerned her. She wants me to talk to the neurologist and see her again in 3 months.

 
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Old 11-15-2018, 04:01 AM   #5
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Re: Misdiagnosis ...

A neurologist is where you need to be at this point. He or she will probably order an MRI of your brain and spine...a pinched nerve in your spine can also cause symptoms such as you describe.

The fact that the EMG was clean means that it could be related to damage on the spine, but the muscle is obviously contracting normally.

See a neuro and let us know how you are. I hope you feel better soon!
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Old 11-27-2018, 03:00 PM   #6
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Re: Misdiagnosis ...

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A neurologist is where you need to be at this point. He or she will probably order an MRI of your brain and spine...a pinched nerve in your spine can also cause symptoms such as you describe.

The fact that the EMG was clean means that it could be related to damage on the spine, but the muscle is obviously contracting normally.

See a neuro and let us know how you are. I hope you feel better soon!
Thank you for your kind words! I went to see the neurologist yesterday and she ordered an MRI of my brain and spine. She went over a full history of my symptoms and other things I didnít realize could be related. She also did a physical evaluation and made note that I have both balance issues and muscle weakness of the lower extremities. She has me scheduled for a follow up in January on a day that an MS specialist is there Incase my MRI comes back abnormal and there are lesions.

 
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Old 11-27-2018, 06:16 PM   #7
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Re: Misdiagnosis ...

Donnnam7,
I am really glad to hear you have a neurologist who is willing to help you. I didnt want to write this earlier because I didn't want to scare you...but I have MS- and my symptoms started very much like yours, only mine were in my hands and fingers. My first visit to the doctor was after my hand was "asleep" for almost a week and nothing I did would make it feel awake.

They of course felt it was a pinched nerve and sent me for a CT scan. Unfortunately, the CT scan showed abnormalities and off to a MS specialist I went. I had my Diagnosis in less than 24 hours.

I dont want to tell you too much or scare you in anyway, but I hope this part helps. I was diagnosed almost 15 years ago. Since then I have raised 3 children, had a happy marriage, gone back to school and have gotten 3 degrees. No one knows I have MS unless I tell them. (big symptom of MS is that the signs are invisible to anyone else) I work out 4-5 days a week and I take barre classes, TRX, Yoga, Cardio classes as well as free weights. My job has me working in a different state 2x a month. My life is full and nothing is missing! If, and I mean IF it comes back that the MS specialist thinks it might be MS- don't let it scare you. Its not the end of the world and over 400,000 people live with it in the US alone every day.

There is a ton of support here for MS and if you find out you have to learn more about the disease, you are in the right place.

Its very possible that this IS NOT MS. MS mimics quite a few other diseases and until you have all the tests (its a long process of allot of tests) you should pretend nothing is wrong and stay focused on today- not tomorrow.
Try to not stress- easier said than done I know- but stress is one of the things which makes symptoms worse...so try to keep yourself distracted.

We are here if you need us!

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