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Deanna W
@harmony4life

Posts: 4
Joined: Apr 22, 2015

Myasthenia Gravis

Posted by @harmony4life, May 24, 2015

I have my initial consult at Mayo in Rochester, MN Tuesday and will be heading there tomorrow. I am surprised with how nervous I feel.

My symptoms began a few years ago with what I thought was arthritis in my hands. I’ve never tested positive for any inflammatory conditions and the pain has spread to most of my body. I have muscle weakness, fatigue, and now when I smile my cheek muscles quiver visibly. I’ve been nervous to think much about it since I have an aunt who died from ALS. I finally saw a neurologist who tested me for one thing only- Myasenthia Gravis (MG). I had never heard of it.

I tested positive and he stated he feels it’s a false positive. Still, he started me on a prescription for it. He also told me the pain I have would have nothing to do with MG. I asked him, since he felt it was a false positive, what else would we test for- he shrugged his shoulders and said he isn’t God and to feel free to get another opinion.

That leads me here. I have fears- what if I leave with no answers? What if I sound neurotic openly sharing all of my symptoms? What if I have to live with this pain for the rest of my life? What if I lose my job because the pain is impacting me at work? What if I’m told it is all in my head and no one believes in me?

My nephew has doctored at Mayo for years because of a rare disease he has and they have been so very wonderful. My head tells me to trust these professionals and the process. My head tells me that whatever I have isn’t life threatening and to stop feeling sorry for myself.

I guess I’m just venting- exhaling all my fears and nervousness then struggling to deeply inhale self-courage, the confidence to articulate what I am experiencing and the belief that someone will hear me and seek answers on my behalf. After all, the unknown might very well be the most frightening experience in all of this.

If you are still reading this, whoever you are, thanks for listening. I just closed my eyes and sent good wishes to you on your personal journey. You are not alone.

Blessings…

Liked by Tess NYC

REPLY

Hello Deanna,
I just read your post and am so sorry about your problems. I only wanted to ask you if you are on any statin drug. Reason I ask that is I have had a lot of problems with my health and they were all due to the statin drug. Perhaps you may have some medication causing your problem and doctors don’t always know what medications do to some people. My urine turned black while on statins before the doctor and the blood tests ever showed what was going on. Let me know okay and do hope perhaps by now you have some answers. By the way, ALS is one of the diseases that has symptoms like those of a person who reacts to statins.
Please let me know as I am concerned for you.

Anne

@anneszymanski

Hello Deanna,
I just read your post and am so sorry about your problems. I only wanted to ask you if you are on any statin drug. Reason I ask that is I have had a lot of problems with my health and they were all due to the statin drug. Perhaps you may have some medication causing your problem and doctors don’t always know what medications do to some people. My urine turned black while on statins before the doctor and the blood tests ever showed what was going on. Let me know okay and do hope perhaps by now you have some answers. By the way, ALS is one of the diseases that has symptoms like those of a person who reacts to statins.
Please let me know as I am concerned for you.

Anne

Jump to this post

Anne,

Thank you for you response to my post. I am not on statins and never have
been. On day two of my appointments last week I was told that i do not have
MG but that it is something autoimmune. I have seen 70 labs posted this
far to my Mayo Clinic app and my abnormal tests results are in reference to
proteins and inflammation.

I return to Mayo On the 11th to meet with my neurologist – no follow-up
visit has been scheduled with my rheumatologist. Locally I’m used to being
able to email my doctors so it is a challenge to not have the option of
submitting questions electronically.

I know that I need to return to work but admit that I’m concerned about how
my symptoms will respond to the stress of it. I don’t know if it is a
symptom or a response to the pain which impairs my cognitive function.

Patience has never been one of my strengths.

Deanna

@anneszymanski

Hello Deanna,
I just read your post and am so sorry about your problems. I only wanted to ask you if you are on any statin drug. Reason I ask that is I have had a lot of problems with my health and they were all due to the statin drug. Perhaps you may have some medication causing your problem and doctors don’t always know what medications do to some people. My urine turned black while on statins before the doctor and the blood tests ever showed what was going on. Let me know okay and do hope perhaps by now you have some answers. By the way, ALS is one of the diseases that has symptoms like those of a person who reacts to statins.
Please let me know as I am concerned for you.

Anne

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Good Morning Deanna,
So happy to hear you have not taken the statin drug. My next response to this is perhaps you can be tested for amyloidosis which seems to be, from what I read, something most doctors do not test for. It does affect the muscles and the proteins are involved too. The article I just read states that the proteins are abnormal in the brain which is why the cognitive problems in amyloidosis. Just a suggestion for you to ask the doctors about this? Some of these diseases, if caught early, can be helped with medications.
Please keep me apprise of your health issues as it is so important to all of us when one has problems such as yours and answers are not found immediately. It gives us some guidance for our own lives.

Thank you so much for sharing your issues and my one biggest belief in life and I tried to teach it to my children is “Patience is a virtue” so try hard to be patient Deanna and perhaps your answers will be with you soon.

Anne

I have different issues than you, but I was very anxious and eventually depressed. My doctors put me on anxiety medicine and depression. Both have helped a lot.

@surfin232

I have different issues than you, but I was very anxious and eventually depressed. My doctors put me on anxiety medicine and depression. Both have helped a lot.

Jump to this post

I’ve had a lot of anxiety with this. I had my follow up appointment at
Mayo- it was with neurology- I had contacted them thinking I didn’t need my
neuro visit…that I needed follow up with rheumatology. They said I
needed it

Drive down the day before, stayed at a hotel then went to my appointment in
the morning only to hear the doctor say “I don’t know why we have this
appointment when I could have told you anything in the phone. I can’t
interpret any rheumatology labs”. She tried calling that dr multiple times
and when she finally got through they said the de was in Rome for the
week. My neuro mentioned to the nurse that the rheumy’s notes weren’t in
the system. She told them to look into the missing notes and to call her.

I walked over to rheumatology and asked for another rheumy dr to review the
labs. I guess that couldn’t be done since the dr notes were missing. I was
given the direct # for the rheumy nurse – left a detailed msg and stated
that I drive to town and would wait in the building until they returned my
call.

Went to the Patient experiences department and filed a complaint. I have my
employer and short term disability people waiting on answers in addition to
my own need for answers (and husband). He said he would have the dr call
me Monday.

The nurse never called on Thursday or Friday. Unprofessional.

Now I wait

@surfin232

I have different issues than you, but I was very anxious and eventually depressed. My doctors put me on anxiety medicine and depression. Both have helped a lot.

Jump to this post

Hi Deanna,

I am so sorry that you have encountered the problems you discuss here in your email. Seems a shame when a person who is having to deal with health issues, has to end up emotionally drained due to misunderstandings, doctors not there, etc. Do you get copies of the doctor’s reports each time you have an appointment? I ask for a copy or I ask if they can send it via email. Sometimes I do have to wait or call back again in order to get them. Needless to say, there are mistakes on those reports too.

I do hope that Monday you will get some answers….the problem is there are so many many kinds of diseases out there that most doctors have to start from scratch and work up but they also need to cooperate if you are making an effort to be there. I am wondering why the neuro doctor just didn’t go ahead and start you on any procedures he/she may have come up with. Have you had any work done by them yet? If I understand correctly, it is the neuro you went to see, right? Okay, so they don’t have anything from the rheumo but I would have assumed he/she would start you by asking questions and getting some answers from you. I assume this neuro is new and you have not been there before?

Keep me apprise on your response from this doctor…..I am going to go back and read your history again.

Have as nice a weekend as possible considering you have not gotten any answers yet…must be so difficult to deal with.

Your friend,

Anne

@surfin232

I have different issues than you, but I was very anxious and eventually depressed. My doctors put me on anxiety medicine and depression. Both have helped a lot.

Jump to this post

Hi @harmony4life! I’m so sorry you feel your experience at Mayo Clinic was unsatisfactory and that we caused you anxiety. I’ll follow up with the Office of Patient Experience, and try to draw attention to your concerns. I hope we are able to fix this for you and give you a better experience in the future!

@surfin232

I have different issues than you, but I was very anxious and eventually depressed. My doctors put me on anxiety medicine and depression. Both have helped a lot.

Jump to this post

I have to agree with Deanna W. on the experience at Mayo. It certainly wasn’t up to the standards I expected of such a prestigious institution.

@anneszymanski

Hello Deanna,
I just read your post and am so sorry about your problems. I only wanted to ask you if you are on any statin drug. Reason I ask that is I have had a lot of problems with my health and they were all due to the statin drug. Perhaps you may have some medication causing your problem and doctors don’t always know what medications do to some people. My urine turned black while on statins before the doctor and the blood tests ever showed what was going on. Let me know okay and do hope perhaps by now you have some answers. By the way, ALS is one of the diseases that has symptoms like those of a person who reacts to statins.
Please let me know as I am concerned for you.

Anne

Jump to this post

I just found this in my drafts from June 7th In on my way to Mayo clinic now for my follow up with neurology and hope to see rheumatologist.

My dog was confirmed to have Lyme disease and so I hope to have that test run. Perhaps chronic Lyme disease is the answer.

I’m bringing a CT from the dentist showing some degeneration in the jaw cartilidge because of…inflamation. Inflamation is a Common denominator.

I read about amyloidosis

>

@anneszymanski

Hello Deanna,
I just read your post and am so sorry about your problems. I only wanted to ask you if you are on any statin drug. Reason I ask that is I have had a lot of problems with my health and they were all due to the statin drug. Perhaps you may have some medication causing your problem and doctors don’t always know what medications do to some people. My urine turned black while on statins before the doctor and the blood tests ever showed what was going on. Let me know okay and do hope perhaps by now you have some answers. By the way, ALS is one of the diseases that has symptoms like those of a person who reacts to statins.
Please let me know as I am concerned for you.

Anne

Jump to this post

Good Evening Deanna,

Perhaps the answer is the Lyme Disease….don’t know if I want to wish that on you but perhaps that could be an answer and you won’t be hunting anymore. It is awful not to feel well and not know why.

I wish you the best of luck and please let me know what the results are.

Have a happy holiday tomorrow in celebration of the wonderful country we live in.

Your friend,

Anne

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