Diagnosed post viral syndrome. Do I keep pushing?
 

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?

Welcome Rockthecasba121. :Wave-Hello:

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.

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.

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?

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;

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

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

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

Possible infection or inflammation?

Doesn't sound like MG.

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

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

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.

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.

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.

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

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.

Yeah, I wouldn't be happy with a nondescript diagnosis either! ;)

Have you been tested for celiac disease? Since your B12 and D were low, that's a possibility. Are you on any antacids? That can reduce B12, iron, albumin, and calcium.

How much magnesium are you taking? Usually, people can get what they need from foods (i.e., nuts). It can be bad for MG if taken in too high of a dose.

Are you taking methylcobalamin? Many people have a MTHFR mutation and cannot convert cyanocobalamin into methylcobalamin. I hope you'll take a separate supplement for that.

Are you taking D3?

I'm asking pretty obvious questions, but I don't want to assume anything.

Lupus is a funny disease. It can creep up slowly. And it comes in "flares." Pain and fatigue can be the first symptoms. I still think that a second opinion from a good rheumy is a smart thing to do. At least rule it out.

I think some doctors are allergic to thinking. I hope you can find a couple of them who aren't!

Annie

I have not been tested for celiac's. Wouldn't stomach issues be a first sign of that? I would say I eat a pretty large amount of gluten. It would probably be helpful to know that I am a vegetarian and have been for well over 10 years but have never had symptoms like this before.

I am taking 650mg magnesium I believe. I am taking cyanocobalamin 500 mcg a day, but recently read I should probably take more as absorbtion rates can be a lot lower. The vitamin D is D3. I'm not on any antacids.

I am a little worried about Lupus. Doesn't that usually present in joint pain and swelling though? My joints appear fine and my pain and weakness seems to stem more from the muscle.

You might not have lupus, but with a speckled titer such as that, it's useful to rule it out. And a rheumy can rule out any other issues such as polymyositis, Sjogrens, etc. Their realm is inflammation and I really like their unique perspective. They might be able to determine why that titer is high and speckled! Wouldn't you want to know?

Lupus varies greatly from person to person. Don't be afraid of something you don't know you have! I just thought it would be useful to see another type of specialist for an evaluation. Neuros only do so much.

The liver converts cyanocobalamin B12 into methylcobalamin B12 so that the body can use it. So it's best to use the methyl, if you can. I like the Jarrow Formula brand. I had a severe B12 deficiency years ago and take the 5 mg. daily (I take it twice a day).

650 mg of magnesium is fairly high, especially if you have MG. Since you're a vegan, it should be easy to get that from foods.

Stomach issues are not always present with celiac. In fact, you can have no obvious symptoms and still have it, which is not at all useful! ;) Most people do, though. Gluten sensitivity is just as damaging and harder to figure out. An internist can test for the antibodies.

Some diseases mimic others, so it can take a while to figure out what's going on. I personally like having a second set of eyes and ears (and brain) on something.

Annie

I'll be seeing an internist on Monday, so hopefully more tests can be run.

What symptoms did you have with your b12 deficiency?

I had been really tired since about 1997 (probably earlier). Then I was so tired that I felt sick. I had numbness/tingling (paresthesias) in my hands, feet, and face, low back pain, off and on severe headaches, palpitations, feeling of being faint, increasingly lower white blood cell count, and more odd little symptoms.

The fatigue was so bad that I felt as though I was dying in the last several months. I had to finally beg my doctor to run the test in 1999.

My homocysteine was elevated. Methylmalonic acid can also be elevated with a deficiency. People can be "deficient," meaning that not enough B12 is getting to their tissues, and still have a normal B12 level. Mine was below normal.

The cause of my B12 deficiency was a lack of stomach acid. I was also having reactive hypoglycemia due to that.

A good doctor will ask for all of your symptoms and really listen. Writing them down will help a lot, since it takes less time to look at a list of them than to hear them.

One thing your internist could run is a CPK (creatine phosphokinase).

Are you at all short of breath? Or do you only have muscle issues?

Good luck with the appt.!

Annie

I had a normal CPK test about a week or two in to my symptoms.

My breathing seems to be mostly normal. I am stuffed up currently but am still able to get deep breaths.

Annie,

My neurologist's office just called and told me my bloodwork came back with elevated levels of b6: b6 when the recommended max is 30. Do you have any insight on this? I read some anecdotal accounts where people with high b6 had the same symptoms.

Have you been taking B6 supplements? Overdosing B6 without adding supplements is rare.

I had been taking a b complex. I also drink red bull which has significant b6.

Then I think that you have, at least part, of your answer. STOP the red bull, it also has heaps of caffeine. Stop the b complex. Take B12, drink water and give yourself some time to detox, then see how you are.

Stop the Red Bull! ;)

Too much B6 is toxic. Try to find a multivitamin with a low dose of it.

Annie

I have stopped the red bull and b complex. I also switched to methyl b12. I saw a rheumy yesterday who said he thinks it is probably post viral as well as but is having a bunch of blood tests run just in case. I guess we will see if anything comes up. I am feeling a lot more stiff this week, especially in my hands.

Just for an update, I had a second EMG/NCV today. My nerve conduction study showed something like a 6 or 7% decline in output one my foot after resistance was applied for one minute. The Neurologist said this was "myasthenic". Are there any other conditions that would have this same issue or am I pretty much looking at MG? The EMG part was normal in all four limbs, and of course, all the fasciculations go away as soon as I get a needle stuck in me.

Also, those with MG, do you find one limb being hit harder than another?

In my case, weakness is very asymmetrical. My right eye is worse than my left. My left leg is worse than my right.

Thanks. My right arm and both legs are currently being heavily hit.

ask for a western blot
(Western blot
This is an immunoassay test method that detects specific proteins in blood or tissue. It combines an electrophoresis step with a step that transfers (blots) the separated proteins onto a membrane. Western blot is often used as a follow-up test to confirm the presence of an antibody and to help diagnose a condition. Examples of its use include confirmatory HIV and Lyme disease testing.)


I had to pay $475 for it but , insurance would not cover it all... But it is the de facto for lyme...

then get to a neurologist and get tested fot MG and LEMS

ask for blood work and a EMG

get your vitamin d tested also
its a simple blood test vit d25 test
get your levels as close to 80 as you can
I take 6000 IU a day levels are re checked every 3 months im at a 68.7 right now :)
do a quick Google on vitamin d3 and what it can help, and prevent.. it is amazing stuff

I've already done the western blot for lyme. It was negative. My bloodwork showed low vitamin D so I'm currently taking 5000ius a day.

Awesome!!!

Ditto on the asymmetry.

Yeah, it sounds like MG. When do you hear back for sure?

Annie

They're doing the nerve conduction test on my face I think Wednesday. No one has mentioned a SFEMG yet. They told me no signs of mnd but that my foot was myasthenic during the test. My bloodwork script says "dx: Myasthenia Gravis" on it. I'm not sure how much more testing needs to be done to confirm. From my understanding, there is really no other diseases that would cause this finding, correct?

I followed up with my neurologist yesterday. She doesn't say much, so it's hard to get a read on everything. The guy who did my NCV did both of my thumbs this time. The decline in CMAP was not as bad as my foot from last time. I think I heard him mumble something like 4 or 5% when he was writing his notes. Does anyone know the limits they look for? Also, is it possible for certain muscles to have it and others to not? I feel like my issues are more in the longer muscles, like my quads. Blood work for antibodies is not in yet.

The neurologist upped my neurontin and put me on mestinon. I start off slow on the mestinon. Does it take long to notice a difference?

Additionally, what is the NCV findings in LEMS?

I should add, my neurologist has now EMG'd pretty much everywhere. The face needles hurt real bad. Not sure what she was looking for there, but the needle in your cheek is no fun. She said no signs of MND, which was my initial fear that I am having trouble forgetting about. I started seeing a counselor who does cognitive behavioral therapy in order for this not to turn into a hypochondriac type situation.

Why didn't they do the RNS on the EDC (extensor digitorum communis muscle?! AKA the forearm. That's what they usually do.

http://neuromuscular.wustl.edu/mtime/mgdx.html

http://www.ncbi.nlm.nih.gov/pubmed/11165533

Get a copy of all of your test results!

MG does affect the proximal muscles more. I don't know why your feet showed positive results.

I think you need to see a neuromuscular specialist. Did the blood tests come back?

Why do you need to see a counselor? Do YOU think you're a hypochondriac? I don't. It seems to me that they wouldn't say that you had MG if you didn't. What's going on here?!

Annie

The guy who does the NCV does them all over my area, so I think he's pretty respected. When he did my foot, I actually think it was testing extensor digitorum longus. I just said foot because to fatigue it, I had to push my foot up against his hand. No blood tests yet. Probably won't be back until next week. I also had my b12 retested and they're doing intrinsic factor this time. My doctor thinks its suspect that my b12 was so low with how much red bull I was drinking. I couldn't get in to the MG specialist here, nor did he respond to an email.

I was not previously a hypochondriac, but the initial onset of weakness and muscle twitching led me to google which led me to ALS. Despite negative EMG's, I've had a hard time letting go of this fear, so I signed up for counseling on my own.

I can understand the ALS fear. A friend of mine died of ALS.

Do you mind saying where the MG expert was? Maybe someone here knows of another one who isn't so unresponsive!

It's always good to talk to someone about facing down any disease. I've done it. Lots of people do. But that does not equate to your being a hypochondriac. There's obviously something going on with you that is very real.

It's important that they know for sure what is going on. It would be pretty awful if you were diagnosed with one thing but it ended up being something else. I really hope you can find an expert to help you!

Annie

Pittsburgh area.

I have the urge to ask about your friends als symptoms, but I am not supposed to. I know that emg changes are present well before one feels different.