Mystery Medicine? Newbie -- Needs help!
 

I look forward to everyone's advice, because I have been on a very long journey.

Over ten years ago, I woke up only able to freely lift up my right arm/leg. Days later, I recovered to a significant degree.

The Neurologist thought stroke and MRIs were ordered and came up nothing. I had a nerve conduction test which showed peripheral nerve weakening, so he thought I had some disorder in which the nerves weakened over time. (Sorry, he had a very thick accent, and I could not understand him. I was too young/naive to speak up or ask him to write it down.)

Flash forward, Dec. 2009, I wake up fighting to breathe; I forced myself to cough, until my throat hurt.


I was literally scared to go back to sleep. The next day I saw a doctor, who said he thought I had pneumonia. He gave me antibiotics and inhalers.


Follow-up showed no improvement, but I was increasingly aware that I could not sleep on my left side. If I did, I would wake up, feeling as if I was drowning, and I could feel tightness around a portion of my left lung during periods of rest.

I reported this symptom to doctors. I had pulmonary functions tests (both showing a fail to exhale on a portion of the test), sleep study, CT-scans, and another round of MRIs.

The MRI showed that I had an enlarged thymus with a remnant on it, which they said was nothing significant.

My primary doctor and radiologist thought the symptoms were indicative of MG, but I had to get a formal diagnosis from a neurologist.

I did and the lady was a joke. She didn't even look at my chart, so I kindly asked for another neurologist.

Neurologist #3 looked at my symptoms, which were oddly only on the right side, and suggested a trial of mestinone. It worked fine while the dosage was low, even enhance my muscle strength on the right side, but as soon as I increased the medicine, I was left practically paralyzed for three hours on both sides. It was a scary feeling.

I was ordered to stop taking the meds, and I was referred to a neuromuscular specialist. I had another nerve conduction test, which proved no weakness, but the previous one that was over ten years-old did show weakness.

He saw that the "remnant" growing on my thymus was now 5.7 cm "tissue" and was suggesting a thymectomy, but he wanted to order another round of MRIs with and without contrast.

Fortunately, the tissue on the thymus had stop growing and it was benign. However, my NIGHTTIME breathing was getting worse, in that I was now no longer able to sleep on

I look forward to everyone's advice and attention to detail, because I have been on a very long journey.


Over ten years ago, I woke up only able to freely lift up my right arm/leg. Days later, I recovered to a significant degree, but I still had to be conscious to lift up my right leg, though my right arm had pretty much recovered.


The Neurologist thought stroke and MRIs were ordered and came up nothing. I had a nerve conduction test which showed peripheral nerve weakening, so he thought I had some disorder in which the nerves weakened over time. (Sorry, he had a very thick accent, and I could not understand him. I was too young/naive to speak up or ask him to write it down.)


Flash forward, Dec. 2009, I wake up fighting to breathe; I forced myself to cough, until my throat hurt.


I was literally scared to go back to sleep. The next day I saw a doctor, who said he thought I had pneumonia. He gave me antibiotics and inhalers.


Follow-up showed no improvement, but I was increasingly aware that I could not sleep on my left side. If I did, I would wake up, feeling as if I was drowning, and I could feel tightness around a portion of my left lung during periods of rest.


I reported this symptom to doctors. I had pulmonary functions tests (both showing a fail to exhale on a portion of the test), sleep study, CT-scans, and another round of MRIs.


The MRI showed that I had an enlarged thymus with a remnant on it, which they said was nothing significant.


My primary doctor and radiologist thought the symptoms were indicative of MG, but I had to get a formal diagnosis from a neurologist.


I did and the lady was a joke. She didn't even look at my chart, so I kindly asked for another neurologist.



Neurologist #3 looked at my symptoms, which were oddly only on the right side, and suggested a trial of mestinone. It worked fine while the dosage was low, even enhance my muscle strength on the right side, but as soon as I increased the medicine, I was left practically paralyzed for three hours on both sides. It was a scary feeling.


I was ordered to stop taking the meds, and I was referred to a neuromuscular specialist. I had another nerve conduction test, which proved no weakness, but the previous one that was over ten years-old did show weakness.


He saw that the "remnant" growing on my thymus was now 5.7 cm "tissue" and was suggesting a thymectomy, but he wanted to order another round of MRIs with and without contrast.


Fortunately, the tissue on the thymus had stop growing and it was benign. However, my NIGHTTIME breathing was getting worse, in that I was now no longer able to sleep on my left side or back for long periods of time, without feeling deprived of oxygen.


Long story short, he told me to resume taking mestinone but keep the dosage low 90mg/a day, which remember at first worked wonders for me, giving me muscle strength. However, I was not able to remember whether it supported my breathing, since I pretty much slept on my right side to avoid an interruption in my sleep.


This time, the doctor wanted me to pay attention to whether the meds were allowing me to get a proper night's rest, and I must say they did, though there is slight blurriest in my vision from time to time.


I looked it up and blurred vision is a side effect, but I don't know whether I should stop taking the meds, because of that.


Anyway, I have a follow MRI in about four months to monitor the tissue on the thymus.


What I want to know is whether or not I have MG?


The doctors have said it was hard to determine, because I only have weakness or symptoms on only one side.


After much thought, I think I must have weakness on my left side, because I literally felt as if the left lung wanting to expand but struggling and constricting, whenever I would recline on the sofa for about twenty minutes or so.


It felt as if the weight of my body reclining on the lung was too much for the muscles to support in that position. If I stood up, it was much better, but the pulmonary function test showed I had difficulty exhaling on two tests.


I don't know. I did know I had slight breathing concern while in an upright position, doing minimal activity. However, it was nothing compared to my nigh time sleeping on my left side.


All I know is that my case is different that a typical MG case, if it is one at all. I just want to know if someone with MG have atypical symptoms or am I on the wrong path?

At this point, my neuro-muscular specialist is treating the symptoms, not diagnosing. Last count, I had my primary doctor, radiologist, and one neurologist saying possible MG.


The one with the most credentials is still not saying that. If it is not MG, then I might be harboring a tumor on my thymus, but I read that 20% of MG patients have a thymus with benign tumors.


Hmmm....

mystery medicene, newbie needs help
 

Dear Poetist,
This is my first time to replay to this support site. I have quietly read all of your questions and responses since March of this year and have learned so much from all of you.
I feel that I must respond to this question as I have MG and also thymoma. I am currently on 90mg mestinon 4 times daily with IVIG every 3 weeks.
You need to take the "tissue" growth on your thymus very seriously. There is no way that the Doctors can say for certain that the growth is "benign" without removing it for full biopsy. Also, your thymus and growth may actually be much larger than what the MRI and CT scans are showing. Even though most thymomas are "benign" as in not a true carcinoma, it is a aggressive albeit slow growing tumor that can invade lung space, invade pleural space and wrap around the great vessel of the heart. This does not necessarily show up on scans. This could be causing some of your breathing symptoms.
I would urge you to go to a clinic that had surgeons that have experience with thymectomy and thymoma and have your thymus removed.
My surgeon was sure that my enlarged thymus with a very small, 1.7cm growth was benign. When the pathology report came in, it was more advanced in stage that they thought. I am now at MD Anderson getting proton radiation therapy to hopefully prevent any recurrence down the road.
**
I don't want to be an alarmist, but am concerned for your symptoms.
Good luck,
Sherry from Texas

Wow, what a long and trying journey you have been on! I will try to help you where I can. I do know that I too have asymmetrical weakness in my limbs and that it baffled a neurologist who turned out to be clueless about MG. The Australian Myasthenic Association discusses that it is a common presentation and you may want to read their site. The asymmetry was a non issue for my MG expert. . .he didn't even mention it. He knew by the thumb, finger, neck, back, leg, stomach, tongue, eye, face etc strength tests that no one else did that my case was indicative of MG.

What I don't understand is that if your thymus is that huge, why they are waiting to take it out? It sounds like something impt is wrong and how can they tell it's benign w/o a biopsy? My MRI/CT shows a mass and they said they don't know if it is enlargement or tumor and they are doing surgery and they also said the finding is a definitive diagnosis for MG.

Are you at a specialty center that sees MG on a regular basis? Just because you are seeing a neuro muscular expert does not mean that he/she has enough experience with MG. . .that is what happened to me at the beginning. . .

I hope this helps, debra

Hello,

I just want to add to what the others have posted.

I too had a growth on my thymus (estimated at 4cm). There was no question with my doctor that it had to be removed. Turned out mine was a Stage IIa and I had to have 25 radiation treatments. No one was excpecting this, least of all me.

Your enlarged thymus with "remnant" may possibly be contributing to your breathing problems.

You need to find a neurologist who is more familiar with MG. Do you have a MDA clinic in your city/area? If so, they could make a recommendation.

Good luck with your journey.:hug:

Wow, I'm sorry I didn't come back to this thread until now, but I only go on-line at night. Quite honestly, I was too tired. You can see I was already too tired posting my original post, which was duplicated and poorly edited.

Thanks for all of your posts despite the challenges in reading it.

Gee, your growth was only 4cm and was removed. My growth, at last count, was 5.7cm.

I do not know what MDA means (Muscular Dystrophy???). I have Kaiser, so I will have to see what is my next move to get them to move or if they even have to move.




The funny thing is that the doctor was all gung-ho about a thymectomy, but after the latest round of MRIs, he said it was not necessary at this time. I, too, wondered about how he could tell whether or not the tissue was benign or malignant, but a friend of mine informed me of someone she knew who had an MRI with contrast.

The contrast helps them determine whether or not the tissue is benign or malignant. (I did check this out and it's true. Still, I don't like the idea of some growth in my body.)

That's true, but I have Kaiser (HMO). The previous neurologist, who referred me to the neuro-muscular specialist had a lot of MG patients, he thought MG, but he wanted to give a trial run of Mestinone. I could not take 90mg/3 times a day, and so he had concerns and sent me to the neuro-muscular specialist for a definitive answer.

The neuro-muscular specialist looks too young to have any experience under his belt. I mean he looks my age 40 or younger, so I do not know how many years of practice does he have, considering he has a specialty in medicine.


See, I asked my doctor can he just removed the darn thing. If it is harmless no harm no fowl, just an ugly scar. I guess I was feeling relieved that I can now breathe with the lower dosage of Mestinone. Plus, I knew I had this for well over a decade, and I'm still alive and I had the MRI with contrast to prove it.

Now, I'm thinking it's just a band-aide for what could possible visit me.
I'm not so comfortable sitting on that thought.

Does anyone know what to do if you have an HMO? Do you have to come out of your pocket and pay an outside facility for the best medical advice?