[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.

[davew41]

Originally Posted by 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?

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

[Rockthecasbah121]

Originally Posted by davew41

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.