[Rockthecasbah121]

I'm new here and wanted to get some opinions on my recent health problems. I am 25, male, white and had shingles 1.5 years ago.

A little over a month ago I was having throat tightness that seemed to be slightly effecting my swallowing. My pcp diagnosed a sinus infection based on post nasal drip. I was subscribed augmentin. A few days into augmentin I noticed stiff hands and eventually leg and arm weakness. About a week in I had lack of leg reflexes and then a week and a half after that I had no arm reflexes. I have had the weakness issue for about four weeks now. Along with weakness, I've had some tingling, tightness, shakiness, and twitching that is increased by activity. Additionally, I get a mild burning sensation in the affected areas that feels like a sunburn. The worst of the weakness seems to have passed but it is still noticable and worse with more activity. My feet sweat all the time and I get overheated walking to the quarter mile to my car at wok despite it being 60 degrees. I am also having trouble keeping weight on despite eating more than usual. I've also noticed more frequent urination.

Currently I am feeling very heavy in my neck and back, like I have a bag of sand ony shoulders. My strength is better in my arms and legs but still notice symptoms with more activity. I also feel as if I am hoarse but my doctor said I still have significant post nasal drip.

First diagnosis was lyme, then mild guillain barre, and now post viral syndrome. Blood tests normal except for speckled Ana titers at 1:80. MRI only showed a large retention cyst in my sinus. Two negative lyme tests and no abnormalities on my emg/ncs. I should note that my vision has felt weaker than normal, but I've had bad vision for sometime and frequently do not wear my glasses. No double vision though or drooping eyelids. My neurologist put me on neurontin which I believe is causing me vertigo and possibly the blurred vision.

Should I continue to seek out additional tests?

[Kitt]

Welcome Rockthecasba121.

[juliejayne]

Hi there Rockthecasba121.

From what you have said, I would ask, have you had any tests for MG? I would think that it was at least worthwhile.

Having said that, much of what you describe, is getting worse with activitity. Many conditions will probably fit that description. The stand out symptom in my opinion, with MG is that yes you get fatigued, but then in a reasonably short time can recover and go again.

I don't yet have a diagnosis, but for example, I will walk 500m to the shops, that will exhaust me to the point of breathlessness, needing a rest, sometimes even legs collapsing under me. However after 30 mins rest, I am back almost to the starting point. Though it can vary dramatically day to day...

It is like having a really old battery in your mobile/cellphone. Works fine, whilst you are doing nothing, but as soon as you try to take a picture.... battery low warning comes up. Get home put it on charge, and it seems fine again. Until it isn't!

If you can afford/get the tests, then I would say do so. Peace of mind, of a definitive test result... whatever the result.. is priceless.

[Rockthecasbah121]

No one has mentioned it so far because I haven't really had any significant eye problems. I am fully insured, so price is not an issue, just getting doctors to think outside the box is hard.

I have the muscle fatigue, but it never fully recovers. I wake up with a certain level of fatigue.

Originally Posted by juliejayne

Hi there Rockthecasba121.

From what you have said, I would ask, have you had any tests for MG? I would think that it was at least worthwhile.

Having said that, much of what you describe, is getting worse with activitity. Many conditions will probably fit that description. The stand out symptom in my opinion, with MG is that yes you get fatigued, but then in a reasonably short time can recover and go again.

I don't yet have a diagnosis, but for example, I will walk 500m to the shops, that will exhaust me to the point of breathlessness, needing a rest, sometimes even legs collapsing under me. However after 30 mins rest, I am back almost to the starting point. Though it can vary dramatically day to day...

It is like having a really old battery in your mobile/cellphone. Works fine, whilst you are doing nothing, but as soon as you try to take a picture.... battery low warning comes up. Get home put it on charge, and it seems fine again. Until it isn't!

If you can afford/get the tests, then I would say do so. Peace of mind, of a definitive test result... whatever the result.. is priceless.

[Rockthecasbah121]

Cost is not an issue. It's just hard to get doctors to think outside the box, especially with all normal tests. No one will consider mg because I've had no real eye problems.

Rest makes my weakness feel better, but it never goes back to 100%. Do people with mg feel mostly normal in the morning?

[juliejayne]

Rockthecasba121,

It is not possible for anyone here to diagnose you over the internet. Good or bad you have to rely on your Doctors for that, but you know your own body best. If you don't feel that the diagnosis from the Doctors covers what you are experiencing, then push for more tests. But be aware, Doctors have fragile egos, and the more you push the less helpfull they may be... it is a balancing act.

That said;

A little over a month ago I was having throat tightness that seemed to be slightly effecting my swallowing.

That could be an MG symptom, or as your pcp diagnosed, a sinus infection.

Stiff hands and eventually leg and arm weakness

.
Again possible MG symptoms... but could be many other things.

Tingling, tightness, shakiness, and twitching that is increased by activity.

Doesn't sound like MG to me, sounds more like a nerve problem.

Additionally, I get a mild burning sensation in the affected areas that feels like a sunburn.

Possible infection or inflammation?

My feet sweat all the time

Doesn't sound like MG.

and I get overheated walking to the quarter mile to my car at work

If you get out of breath, fatgued and push on, then get overheated, might be MG.

Currently I am feeling very heavy in my neck and back, like I have a bag of sand ony shoulders.

Now that sounds like MG, but could be many other things too!

No double vision though or drooping eyelids. My neurologist put me on neurontin which I believe is causing me vertigo and possibly the blurred vision.

Double vision and/or drooping eyelids are one of the easiest symptoms of MG for doctors to spot. But not all MG includes such obvious symptoms.

Why did the neurologist prescribe neurontin? That is generally used for neuropathic pain, which would tie in with several of the symptoms that you have. However if that was the reason and it is not working, then I think that you should go back to the neurologist and ask them to look further.

MG is an annoying condition in that it varies from person to person. That makes it hard for doctors to diagnose. It mimics many other conditions, and often it is only be excluding those other conditions that a good diagnosis is made. You have excluded Lymes and guillain barre, but if you are not getting better, then keep going back.

As I said before... If you can get the tests, then I would say do so. Peace of mind, of a definitive test result... whatever the result.. is priceless.

[Rockthecasbah121]

JulieJayne,

Thanks for the detailed response. My neurologist thought for sure I had mild guillain barre so he prescribed neurontin for the pain. However, I was told to only take it before bed, so I can't say whether or not it helps. I was told it can take up to a month for it to take affect as well, and I've only been on it a little over a week.

With the normal EMG/NCS, the doctor no longer believes it was GBS. I am wondering though if my damage was not severe enough to register outside of normal parameters on the nerve conduction. After the test, the nurse called and said he changed his diagnosis to post-viral, but GBS is considered a post viral infection.

I think the neurontin gives me pretty bade side effects, but I am going to give it more time.

I am concerned about the throat symptoms as when I was diagnosed with the sinus infection, I did not have a sore throat, just tightness. Do MG symptoms disappear for weeks at a time? I had throat symptoms first, they went away, and now I am noticing them four weeks later. I know that this could also be stress related due to just not knowing what is wrong.

[juliejayne]

If the Neuro, thought that it was GBS, then have you asked those over in the Peripheral Neuropathy group. It may be that they can add more information.

MG, is known to vary. But you currently have an alternative diagnosis, and are taking treatment for it. I think you need to resolve one thing at a time, unless you have a good reason to believe that there is something else going on.

[AnnieB3]

Hi, Rockthecasbah. Welcome!

It could be possible that you had an adverse reaction to Augmentin. Did your doctors even consider that possibility? While many patients do not have a severe reaction, there are some who do.

http://www.rxlist.com/augmentin-drug.htm

Sometimes when doctors can't figure something out (makes them nuts, actually), they give you a label such as post viral syndrome. That's sort of funny, since you were told you had a sinus infection (implying bacterial) and were then told it was post VIRAL.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1710789/

Also, I've never known a doctor to diagnose a sinus infection based on post nasal drip! Someone usually has some sort of colored drainage and other symptoms, such as pain over the affected sinus cavity.

Sinus infections are thought to be caused by undiscovered food allergies. Mayo found a connection between sinus infections and fungus. Do you eat a lot of dairy or foods containing yeast?

http://www.sciencedaily.com/releases...0910080344.htm

If you had Guillain-Barre syndrome, and you are still having symptoms of it, they should be giving further treatment. Did you receive plasmapheresis for it? IVIG?

http://www.mayoclinic.org/diseases-c...t/con-20025832

Have you ever had your vitamin B12 checked? Thyroid? Fatigue all day can be caused by a number of things, including a B12 deficiency, hypothyroidism, lupus, and many other things!!!

If you had Guillain-Barre, there are some vaccines you should not have.

http://www.cdc.gov/vaccines/vpd-vac/should-not-vacc.htm

There's really no way you can say that you don't have double vision unless you see a neuro-ophthalmologist. They have very specific visual tests that can show if you have DV or not. Double vision is often mistaken for blurry vision. If you close one eye, does your blurry vision become better? Do you have astigmatism?

Neurontin has been shown to exacerbate MG and, in a few cases, to cause it. It might be more important to know exactly what is causing the pain in order to have the appropriate treatment. Have you tried plain old acetaminophen?

Due to the speckled titer, I would highly recommend that you find a very good rheumatologist. Some people with lupus have this particular titer. If you have lupus, that's nothing to mess with. You'll find that many doctors label patients with BS before they are eventually diagnosed with a concrete disease. Diseases such as lupus are considered "invisible" (though not by good, creative diagnosticians!) and the diagnostic process might go on for months or longer.

https://www.rheumatology.org/Practic...ibodies_(ANA)/

If it's possible that you do have lupus, pain is caused by inflammation. That would not show up on an EMG/NCS.

I do not think you should accept that you're "fine" when you have so many symptoms. I really believe the best place to begin is a rheumatologist. They might want to redo the Lyme test as well. You need a thorough evaluation from ONE doctor, a followup visit to ask more questions, and some kind of answer to what is going on (it could be more than one thing).

Do you have a good internist? They can run some basic tests or refer you to a rheumatologist.

It can be hard to figure out what's going on with a patient, but that's often more of an excuse due to a lack of time or desire to spend the effort or time to help them. You could be a victim of lazy doctoring. You need a doctor who will help you figure out exactly what is going on! I hope you can find some good help!

Annie

[Rockthecasbah121]

Thanks for the response Annie. I am not happy with the post viral diagnosis, as I believe it is just to get me to go away until a more obvious symptom occurs. I haven't heard of people having this bad of a reaction to antibiotics and have never had issues in the past with one. I do agree that being prescribed augmentin for a sinus infection does not make sense, since 90% of them are virus based. I do not think my initial throat symtpoms were a sinus infection. I believe they were the first symtpom of whatever larger issue is going on.

I'm currently not receiving any treatment for GBS nor did I receive any type of treatment prior. The neurontin was prescribed for nerve pain before my EMG/NCS results and the neurologist instructed me to continue taking them anyway after he changed his diagnosis to post viral. I believe it is the neurontin causing me vertigo, as I did not have it prior to starting the medication.

I had a bunch of vitamin levels checked and my b12 was at the low end so I am taking a supplement and my vitamin D was something like 26 when the recommended range is 30-100. I am now taking 4000 units a day with magnesium. None of my doctos seemed worried about the 1:80 speckled titer. They also ran a blood test to check for markers of inflammation which came back normal. I don't really fit the demographics for Lupus, but I will look in to it further.

As for my vision, if I wear my glasses that are about 2 years old, my vision seems perfect to me. Without them, things in the distance are blurry and do not improve when closing one eye. I do have astigmatism, but I never remember which eye it is.

Originally Posted by AnnieB3

Hi, Rockthecasbah. Welcome!

It could be possible that you had an adverse reaction to Augmentin. Did your doctors even consider that possibility? While many patients do not have a severe reaction, there are some who do.


Sometimes when doctors can't figure something out (makes them nuts, actually), they give you a label such as post viral syndrome. That's sort of funny, since you were told you had a sinus infection (implying bacterial) and were then told it was post VIRAL.



Also, I've never known a doctor to diagnose a sinus infection based on post nasal drip! Someone usually has some sort of colored drainage and other symptoms, such as pain over the affected sinus cavity.

Sinus infections are thought to be caused by undiscovered food allergies. Mayo found a connection between sinus infections and fungus. Do you eat a lot of dairy or foods containing yeast?



If you had Guillain-Barre syndrome, and you are still having symptoms of it, they should be giving further treatment. Did you receive plasmapheresis for it? IVIG?



Have you ever had your vitamin B12 checked? Thyroid? Fatigue all day can be caused by a number of things, including a B12 deficiency, hypothyroidism, lupus, and many other things!!!

If you had Guillain-Barre, there are some vaccines you should not have.



There's really no way you can say that you don't have double vision unless you see a neuro-ophthalmologist. They have very specific visual tests that can show if you have DV or not. Double vision is often mistaken for blurry vision. If you close one eye, does your blurry vision become better? Do you have astigmatism?

Neurontin has been shown to exacerbate MG and, in a few cases, to cause it. It might be more important to know exactly what is causing the pain in order to have the appropriate treatment. Have you tried plain old acetaminophen?

Due to the speckled titer, I would highly recommend that you find a very good rheumatologist. Some people with lupus have this particular titer. If you have lupus, that's nothing to mess with. You'll find that many doctors label patients with BS before they are eventually diagnosed with a concrete disease. Diseases such as lupus are considered "invisible" (though not by good, creative diagnosticians!) and the diagnostic process might go on for months or longer.



If it's possible that you do have lupus, pain is caused by inflammation. That would not show up on an EMG/NCS.

I do not think you should accept that you're "fine" when you have so many symptoms. I really believe the best place to begin is a rheumatologist. They might want to redo the Lyme test as well. You need a thorough evaluation from ONE doctor, a followup visit to ask more questions, and some kind of answer to what is going on (it could be more than one thing).

Do you have a good internist? They can run some basic tests or refer you to a rheumatologist.

It can be hard to figure out what's going on with a patient, but that's often more of an excuse due to a lack of time or desire to spend the effort or time to help them. You could be a victim of lazy doctoring. You need a doctor who will help you figure out exactly what is going on! I hope you can find some good help!

Annie