I Want to Give Up

wgreen19 · 07-14-2013, 10:03 AM

Quote:

Originally Posted by strizzlow20

Spoke to the neuro today. He is sending to the Mayo Clinic. I will be making arrangements to see them see after I fork out 500 for a past bill that I owe. I am also going to Shands Medical Center at the University of Florida next Friday for them to look into balance and vision issues. These are my last steps. 2nd sets of MRI came back fine with no lesions or tumors. Doctor still thinks the eye issues are from MG but some of the sensory issues such as tingling aren't consistent with MG. I have no idea of what kinds of test I will go through, I just hope they're thorough. He is also going to have them look into LYME since my other eye issues started when I was 17 in New England. I have floaters, palinopsia, and some phenomenon where you see bright sparks darting in your vision when you look at something like the sky. There's a name for it I just can't remember. Anyways, I don't know. I think after this there's not much to do but to try to plug away. Doctor was ok with me with tapering off of Prednisone since it may skew some of the tests they will do. It's really hard and depressing sometimes.

Good luck with Shands at the University of Florida. I did not have very good luck there, though did receive my diagnosis there; but, then they spent the next several months trying to disprove that I didn't have it, even though Mestinon was a huge difference, as were the treatments of IVIG. My insurance company was pushing me to move away from there, and steered me to a Neurologist in St. Pete who has 'special interest' in MG.

rach73 · 07-15-2013, 05:35 AM

Hiya,
I just wanted to chime in - even though I'm undiagnosed. Tomorrow is my neuro opthalmologist appointment.

I couldn't even look at the pics you put on here as my eyes couldn't cope with it. My vision is awful at the moment double vision, blurring, ghost images, wavy stuff, my peripheral vision jumps up and down. So I get what you are saying completely.

Have you had your b12 levels checked? When my levels are low I get numb or tingly hands and feet. To top my levels up I use solgar liquid b12 drops. You put it under your tongue twice a day. My symptoms of numb or tingly hands and feet disappeared within a week. Its worth giving it try but get drops or sublingual tablets as sometimes your stomach is what's causing the b12 in your diet not to be absorbed.

A good website is called b12d.org sorry I couldn't insert the link my nexus wasn't playing ball. This lists the symptoms of b12 defiency and its much more common than you think.

Don't give up,

Rach

strizzlow20 · 07-15-2013, 02:32 PM

Quote:

Originally Posted by rach73

Hiya,
I just wanted to chime in - even though I'm undiagnosed. Tomorrow is my neuro opthalmologist appointment.

I couldn't even look at the pics you put on here as my eyes couldn't cope with it. My vision is awful at the moment double vision, blurring, ghost images, wavy stuff, my peripheral vision jumps up and down. So I get what you are saying completely.

Have you had your b12 levels checked? When my levels are low I get numb or tingly hands and feet. To top my levels up I use solgar liquid b12 drops. You put it under your tongue twice a day. My symptoms of numb or tingly hands and feet disappeared within a week. Its worth giving it try but get drops or sublingual tablets as sometimes your stomach is what's causing the b12 in your diet not to be absorbed.

A good website is called b12d.org sorry I couldn't insert the link my nexus wasn't playing ball. This lists the symptoms of b12 defiency and its much more common than you think.

Don't give up,

Rach

I've had everything checked you could probably think of. Just MG and low vitamin D so far. I have to wait to see a neuro muscular specialist at Mayo which could take 2months.

rach73 · 07-16-2013, 12:19 AM

Hiya,

Have you got the actual report for your b12 level's? If you go to the website it will show you that what the UK see's as an acceptable level of b12 actually is a lot less than what the body needs.

I don't know what the level is in the USA is but it will probably be around the same as the UK. Here the b12 charity is trying to get it raised as people are suffering from peripheral neoropathy and its being left so long it can't be reversed.

Good luck with the Mayo clinic

Rach

strizzlow20 · 07-16-2013, 05:21 PM

I will post the B12 levels when I can locate them. I have a huge folder of all of my medical records. Mayo called me today and instead of waiting until October they're getting me in on 8/20 now which is really nice. They are going to repeat the single fiber EMG and look into some other things that may contribute to my problems. Last time, I didn't have an abnormal test but I really believe this is going to come back positive because my entire body is weak at times and my muscles strain/tremble if I over do it. This goes away with rest. I've upped my Mestinon does and I have seen improvement with my energy level, but it doesn't touch the vision and all of the weakness. I guess at 27, if this is the MG kicking my butt and making my eyes off constantly, I'm worried about progression/recovery. I'll have to see what they say.

ginnie · 07-16-2013, 07:15 PM

I received my dx from mayo clinic. Great facility. You will go through a lot of tests, but they are wonderful to you while you are there. I wish you all the best. ginnie

strizzlow20 · 07-16-2013, 08:21 PM

Quote:

Originally Posted by ginnie

I received my dx from mayo clinic. Great facility. You will go through a lot of tests, but they are wonderful to you while you are there. I wish you all the best. ginnie

Do you know which doctor you saw by chance? I saw one in 2008 and he wasn't sure if I had MG because the single fiber MG was negative. I have 0 eye issues at the time, only bulbar. I came back home and told my Neurologist and he said he had seen cases (he worked with Dr. Eaton, co-finder of LEMS) where they weren't always positive. We redid the blood work again and it continues to be high.

ginnie · 07-16-2013, 08:33 PM

Quote:

Originally Posted by ginnie

I received my dx from mayo clinic. Great facility. You will go through a lot of tests, but they are wonderful to you while you are there. I wish you all the best. ginnie

Was dx,d with auto immune problrms
In 1984 ot
Doing this on my nook sorry for errors first time

catie · 07-16-2013, 09:34 PM

Hi,
I was also seen at Mayo several years ago and they diagnosed me with MG. I saw a neuro-ophthalmologist for my first appt. and then saw the neurologist later in the day. That was helpful b/c she was aware of the positive tensilon test from their neuro-op and took that into consideration when some of my other tests were not definitive. I hope that you'll be seen by a neuro-op also since you are having vision issues.
Cate

strizzlow20 · 07-16-2013, 09:39 PM

Quote:

Originally Posted by catie

Hi,
I was also seen at Mayo several years ago and they diagnosed me with MG. I saw a neuro-ophthalmologist for my first appt. and then saw the neurologist later in the day. That was helpful b/c she was aware of the positive tensilon test from their neuro-op and took that into consideration when some of my other tests were not definitive. I hope that you'll be seen by a neuro-op also since you are having vision issues.
Cate

They didn't say it was a Neuro-Opthamologist I was seeing but I did see one several weeks back. He noted mild eyelid weakness but when I told him of my wavy vision he looked at me like I had two heads and said it was probably stress. Stress is right, because of the vision issues. Thanks for your answers.

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