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Old 06-05-2017, 04:39 AM #1
Jed the Humanoid Jed the Humanoid is offline
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Default Strange Symptoms

Hello all!

I have had a number of strange symptoms that I have only really noticed this year. I have had a general vague weakness in one side of my body, but I only ever put my leg down to an old sports injury and my arm down to a small lipoma.

Things got even weirder this year when I felt a tiredness in my eye. I took a photo of my face and saw that the eyes were looking significantly different. One eye looked perfectly normal and the other one had a drooping lid. The drooping lid was on the same side as my general weakness. The eye looks fine at times, especially when I am concentrating on looking at you or looking up, but at other times it just looks really wrong.

In my work I find I am really good in the mornings, but by the afternoon my energy levels drop markedly and I am find myself very anxious.

I had never really put any of these symptoms together, but did go to hospital to check my eye. At the small hospital they suspected an infection, but the drops did nothing. On being refered to a larger hospital they ran tests and came to the conclusion that it might be MG and refered me to a neurologist.

The nerve and muscle tests from the ophtamologist came back negative and the neurologist who I then saw seemed totally uninterested in my case. Having a history of cancer I have raised concerns about a tumor of the brain, but they seem very uninterested in that too. I asked for an MRI on my brain but they said they don't want to unless my symptoms worsen. That distresses me somewhat as my cancer was only found incidentally and I think it is better to be safe than sorry when it comes to such things.

I also had two other very strange situations in the last year. One time was after food poisoning. I found my jaw was spasming. I went to the dentist who told me I just needed to relax and it was nothing to worry about. Another time several weeks after my cancer surgery, I thought I was better and drove my car a long way. A bit silly, but I thought I was healing. The next day I felt terrible all over and eventually felt like I was collapsing. For the first time in my life an ambulance was called and I thought it was maybe bad food again plus exhaustion. After several hours laying on the hospital bed, I was tensing up badly and found I couldn't stop putting my tongue out. I started to hyperventilate. After an injection I calmed down and after a few days at home felt improved. I didn't have the eye symptoms at that stage.

That is my story so far and I am a bit frustrated that I cannot seem to find out what has happened. Something is amiss, but I don't really know what it is. The neurologist thinks it is just ptosis, but I have never had ptosis of the eye before and up until last year had never had cancer either, so I am very wary about my health.

I just wondered if anyone more knowlegeable about all of this had any advice for me. BTW I am male and in my late 30's.
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Old 06-05-2017, 08:20 AM #2
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Hi Jed the Humanoid

Welcome to NeuroTalk - I hope that you find the community as knowledgeable and supportive as I have.

My understanding is that lipomas are not usually malignant though they can look like liposarcomas, which are malignant - was any clinical testing done to rule out that possibility?

It is possible that your lipoma has compressed and damaged a nerve on one side of your body - this might explain some of what you have experienced. A neurologist should be able to discuss this with you.

You might finding posting on the "General Health Conditions & Rare Disorders" forum of NT helpful as well. Other NT members might recognise what you have described and make useful suggestions.

All the best.
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Old 06-05-2017, 12:12 PM #3
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Hi, Jed. Welcome.

Do you have the test results from the hospital? If not, please obtain them. You need to know exactly what those tests were and what they say.

Ophthalmologists don't normally run nerve and muscle tests. Can you say what the doctor did?

Normally what is done to test for MG is to run the AChR antibody test (MuSK antibody if that comes back negative), do an RNS, EMG, or SFEMG (more specific to MG), and a thorough clinical exam. There are other tests that can be done, such as a chest CT after there is a diagnosis of MG. Some patients have thymic hyperplasia or a thymoma. Pulmonary function tests are often done as well, both for a baseline reading and to check if breathing is fatigable. MG is all about muscle weakness that is worse upon exertion or repetitive/sustained activity.

Sometimes there is a brain source of one-sided weakness. But MG can also have a dominantly weak side. Mine is my right side. Both sides are weak, but the right more than the left sometimes. I was misdiagnosed with lazy eye when I was ten due to the lopsided droopy eyelid.

The symptoms you describe sound like fatigable weakness, such as becoming worse in the afternoon. That's pretty typical.

What is also pretty typical is the arrogance of some neurologists. You deserve to have a thorough evaluation, not to be pooh-poohed for your very real and serious symptoms. If you say what area you live in, we might be able to refer you to a MG expert. That is the type of neurologist you should see.

Do you have a history of anxiety? I'm only asking because having an undiagnosed condition can cause anxiety, as can the fear of cancer returning.

The breathing pattern in MG when it is worse can mistakenly be labeled hyperventilation, when, in fact, it is due to poor breathing. Has anyone checked your O2 when you feel that way?

There's no such thing as "just ptosis," especially since you have had symptoms of weakness in other parts of your body. If you pull up on the droopy eye, does the other eyelid then droop? Try that some time. That is called "enhanced ptosis" and is another sign of MG/fatigable ptosis. What also makes MG ptosis worse is an upward gaze test. Holding your head still, look upward with the eyes only. Maybe take a photo before and after to see if there is a difference. Eyelid muscles fatigue after this test in MG.

The type of eye doctor to see for ptosis is a neuro-ophthalmologist. They have specific tests to see if eye muscles fatigue or if there is double vision (caused by the two eyes not focusing in concert).

A road trip for someone with undiagnosed and untreated MG can "tank" that condition. Driving uses a lot of different muscle groups. That tends to cause more overall weakness in the body. In other words, the demand for acetylcholine/ACh (muscle gas) goes up when more muscles are used. MGers don't have enough muscle gas getting to the muscles due to the attack on the muscle receptors. There aren't as many muscle receptors for the ACh from the nerves to go through. Make sense?

There are also drugs that can make MG worse (some of the eye drops at the ophthalmologist, for example). Heat can make MG much worse, so stay out of the heat! Both extremes of cold and heat can do that, but heat seems to exacerbate MG much more in most people.

I suggest finding a much better, kinder neurologist who will take your concerns seriously. If we can help with that, please let us know!

I'm sorry you had cancer. Which kind? That might be a clue in the overall picture.

Just take it easy until you are thoroughly evaluated! If you become really weak again, either go to the ER or dial 911. Let them know that you might have MG.

Annie

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Old 06-05-2017, 05:45 PM #4
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Quote:
Originally Posted by kiwi33 View Post
Hi Jed the Humanoid

Welcome to NeuroTalk - I hope that you find the community as knowledgeable and supportive as I have.

My understanding is that lipomas are not usually malignant though they can look like liposarcomas, which are malignant - was any clinical testing done to rule out that possibility?

It is possible that your lipoma has compressed and damaged a nerve on one side of your body - this might explain some of what you have experienced. A neurologist should be able to discuss this with you.

You might finding posting on the "General Health Conditions & Rare Disorders" forum of NT helpful as well. Other NT members might recognise what you have described and make useful suggestions.

All the best.
Thank you for the reply.

I did an ultrasound scan of the small mass in my arm which was then diagnosed as a lipoma. I used to really enjoy playing computer games, but with one hand becoming so weak I simply had to give up. I became convinced the lipoma was causing a weakness especially in my two end fingers.

I went to a major hospital hoping that a quick consultation would result in a relatively straightforward surgery to take it out. My cancer situation was handled so brilliantly that my expectations were high of a favorable outcome, but this was the start of my journey into disappointment when it came to doctors who are not all the same or have the same concern for their patients.

I wanted to talk about my lipoma but this doctor immediately tried to tell me I had a weakness on one side of my body and at the time thought little of it having only recently started having the ptosis. "This is for the lipoma" I thought, but thought I would go along with his test to check my nerves even having told him one I did one at another hospital a year ago with nothing irregular. Maybe he really did have some idea, turned out he didn't particularly care. It was all a waste of time.

A week later, these tests, another 3 weeks to see the doctor again. Of course the tests came back quite normal and I again pressed on getting my lipoma taken out. At first he said it wasn't connected so didn't want to. A few minutes of nothing talk later, I pressed him again. This time he said that it might be close to a nerve and he didn't want to cause more damage. I sat there listening to this thinking 'You have just contradicted yourself and obviously just don't want to do anything'. Basically he had wasted my time, wasted my money and had no solutions, though of course the solution would have been relatively straightforward. To just cut open my arm and remove a rather deep lipoma.

I still think the lipoma might be compressing on a nerve, but seem to have no way of getting anyone to take it out. I would understand if it was something truly complicated.
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Old 06-05-2017, 06:21 PM #5
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Thank you for the detailed reply Annie.

I don't have the results from the hospital, so will have to go in and get them. The opthamologists were very thorough and seemed much more concerned about MG. The nerve and muscle tests I did following my meeting with the arm doctor showed nothing unusual, but I don't know the names of the tests. I think one was a Jolly test, the other one where they pulsed my body with energy, but I don't have the specific names or the actual results. Looking at the way doctors don't seem to talk about the tests that they ordered and that you actually pay for, it is probably best to get hold of everything and interpret it yourself. Having mostly avoided hospitals all my life I see a lot more of them these days and asides from my cancer surgeon, other departments seem very hit and miss with the emphasis on miss. I should get everything and keep it on record. As far as I know my blood test came back normal, but nobody has even mentioned it to me. They didn't say what was being tested or anything more after so I assumed it is normal, but wouldn't know.

This makes me look bad too as I should be knowing what I am doing, but the ptosis was new to me and I assumed doctors were following a particular path and knew exactly what they were trying to do. I am now learning from what you are telling me that I need to become far more pro active in this as the medical profession seems to want to leave me in the dark or not get involved. It's about doing the tests, then telling me as little as possible afterwards.

The neurologist seemed totally uninterested which I found very strange having gone through so much testing to be finally refered to him. They had suggested he might put me on medication to see if it would improve things but nothing. Not even very interested that I had cancer surgery just 6 months ago. I spent such a long time explaining my symptoms and my strange recent health to the ophthamologist that I assumed the neurologist would have it on file and that it would just be onto the next step. He just seemed to look at a few pictures of my eyes from the tests looking quite normal and because the movement is okay and the muscle and nerve test was okay just thinks it is all nothing. He wouldn't listen when I thought it best to at least do an MRI to rule out anything more.

I didn't get to tell him about me being perfect in the mornings then just trying to get through the afternoons, about how when I do my grading the eye droops and I have to stop because I feel too tired, how my hobby of reading is now thrown to the wayside as I cannot concentrate, about how a recent cold lasted 3 weeks and it took my voice 3 weeks more to stop being so hoarse. These are all really weird things for me and just maybe they are nothing to worry about, but they are all happening. Maybe that was my fault too for being too easy going a patient and not pressing more. My wife tells me I should exagerrate my symptoms to get something done, but I am mild mannered and just want to be honest about things. Other times I literally do just forget what to say as going to hospital is stressful and after waiting so long you forget where to start. Then it's over and you realise nothing is getting done.

My anxiety first materialised several years ago, but only led to a full blown panic attack about 3 years ago. It was terrifying as I didn't know it was a panic attack. I read up a lot on it and now keep it mostly under control, but it only gets difficult in the afternoons now. It gets worse with heat and tiredness. It rarely leads to full panic anymore, but it's a difficult sensation to deal with.

I have a terrible intolerance of heat and lately that has really been bothering me. It seems to affect me more than others and I have been complaining about the lack of AC. Mostly my symptoms are the eye and tiredness around that eye, but I do have a general fatigue. The numbness in my fingers might still be that lipoma no doctor wants to touch. My left side is the weak side, right side not so much. If anything I think that side is fine. The neurologist told me one side is more dominant and that is just the way it is. He also told me the odd of MG or a tumor are very low so really there is nothing they can do. He didn't hear a lot of what I wanted to say though.

My cancer was of the kidney. It was found by chance in the very early stages at around a cm. It was removed and my first follow ups show NED. The eye symptoms started showing up a few months ago.

Thank you for all the information Annie. It was very informative. I have been reading the forum a while wondering if I might have MG and I really do not know.
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Old 06-05-2017, 07:19 PM #6
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Numbness in your fingers (plural?)? Have you had your vitamin B12 tested for? Numbness, tingling, etc. in feet, hands, or face can be caused by that. I had a severe B12 deficiency back in 1997-99. It's a very common deficiency, as is vitamin D.

The shortness of breath from MG can actually be mistaken for a panic attack! I don't have panic attacks, but that feeling of not being able to breathe well is unsettling. When breathing is worse, a person with MG can have a physiological hypo- or hyperventilation. That is normally checked with an arterial blood gas. There are always tests to look for signs of MG! Breathing tests specific for MG are MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure).

When you see another neurologist, stick to the MG symptoms. Don't say that you think you have MG! Why neurologists are so arrogant or can't handle patients being smart is beyond me. But there are some really great ones out there. You may want to write down all of your symptoms of weakness, ptosis, etc., when they started, how they progress. Seeing list of symptoms is faster than hearing patients say them all. Plus, you need a really good, neurological exam.

Seeing a neuro does not preclude you from seeing a pulmonologist. I highly recommend that.

Panic attacks, BTW, don't get worse with heat or exertion! But MG does.

The lipoma is probably incidental. It sounds as though you have a generalized weakness, which a lipoma wouldn't cause. And a person can have more than one thing wrong at a time, unfortunately. At one point, I had undiagnosed MG, diabetes insipidus (water diabetes), and a B12 deficiency. Oh, and undiagnosed achlorhydria (lack of stomach acid). Too much fun.

I'm sorry you had kidney cancer. I'm glad they got rid of it!!! When was surgery? Sometimes surgery can bring on an autoimmune disease.

Everyone here knows good neurologists, if you need help in that area. That makes the world of difference. Some of us have had to travel to see an expert just for a diagnosis. I don't know if you have MG, but, if you do, you need some serious help and soon.

Bring a cooler everywhere you go. Or get those cooling ties. Or both. For us MGers, the summer is the time to be prepared to cool down in any way we can, whether that's a handheld fan, cooler, a cold shower, or AC in a car. Cooling down those core/breathing muscles is especially crucial.

Okay, let us know if you need more help!


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Old 06-06-2017, 01:51 AM #7
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Yes, I have a numbness particularly in the 2 small fingers of my right hand. My leg also gets weak. I had always put the leg down to a sports injury I got years ago. I didn't really treat it properly being young and silly, but that too feels weak when I am tired. I went to a chiropractor for the first time last week partly out of desperation at the inability to get anything done at the hospital. He is less than impressed by my general posture and thinks he can help. I am not sure I have anything to lose. I get tired, but not so tired that I cannot move or anything like that. I have only felt that extreme during extreme anxiety or a very odd situation like when I went in the ambulance. On the whole I go for my daily walk and do function throughout the day, it is just that I feel spent and particularly in the afternoons as the heat comes on.

I am so used to feeling tired in the afternoons, having hand and leg numbness and being unable to get a good nights sleep that I sometimes wonder what is normal or not. In the old days I used to drink and thought it was down to an inability to handle alcohol any longer. I stopped drinking which helped reduce the anxiety, but still felt lousy in the afternoons. It gets hot in the summers and I remember a few years ago I went to the hospital complaining about feeling weak and dizzy in the afternoons. They had no idea and I just continued battling on. It became my normal. Looking back I remember more things like this that I had always put down as quite random and unconnected. The eye lately is the first time I have been able to put anything down as quite definitely physically abnormal.

My surgery was in November, so I am pretty much healed from that process. Funnily enough I was more concerned about my eye than my cancer follow ups as I knew my tumor was small and had never presented any symptoms. Meanwhile it is hard to escape a tired feeling eye that looks strange. I was outside talking to a friend earlier today and I asked if my eye looked okay and he said it looked perfectly normal. I showed him a picture of it looking heavy and odd and he found it very surprising. Most of the time I can hide it as I can work the forehead and the eyebrows quite well.

Thank you for the advice, Annie. I will gather my medical records next week and look through everything. I will then go to a different hospital and ask about things more methodically than I have been doing and hopefully someone will take me more seriously. I don't want to have any condition, but at the very least I would like a brain tumor to be physically ruled out and then go from there. It is all sometimes quite difficult for me as I live overseas.

Most of the time I am what you would call okay, but do have the constant numbness, the weird eye and a general fatigue and difficulty staying asleep. For a long time I just assumed some of those things were just me, but the eye has alerted me and so soon after cancer I am on high alert. I will look into all those things and report back. Thanks again!
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