[Sandrine]

Hello, and thanks in advance for any help I may receive.

I have two rare autoimmune conditions already - cryoglobulinemia and aquired angioedema II (apparently one of only 40 ever diagnosed in the US with this type where my own body is attacking my c1 esterase). These made it difficult for me to tell if some of the more severe and odd symptoms I was having were cryo symptoms or something else, as cryoglobulinemia can cause all sorts of problems and symptoms. I am a part of a support group though where we share our symptoms, and a few I have just weren't fitting with everyone else's. And one in particular has been getting so bad - the double vision - I scurried off to the opthalmologists yesterday.

The opthalmologist essentially found that I have a 'wandering eye'. He was very brusque however, and very quick, and wouldn't you know it, my usual blurriness didn't seem so bad yesterday. Anyway, I have a drooping lid, an eye with exotropia (despite having perfect vision until it's recent decline), sometimes my whole face looks droopy, hoarseness if I talk more than a few minutes, trouble breathing (feels like something heavy pressing down on my chest - and at times I am blue around my mouth), and I have been getting these horribly painful esophageal spasms over the last two weeks. Excruciating. Of course I haven't had a work up yet. My doctor did a test for MG after seeing my droopy eye and hearing my voice.

Some of these things happen with cryo, blurriness, hoarseness, and even drooping I think, and pulmonary issues, but not the wandering eye part. It has gotten so bad ain't is incredibly difficult to read. Right now I have patched one of my eyes to try to minimize the double vision, however it's still there.

Does this sound like I may have MG? Which doctor would be the best to see?

Thank you.

[mrsD]

Welcome to NeuroTalk:

I too, have a diagnosis of HAE (hereditary angioedema)...only mine is slightly different. Less pulmonary, less blurred vision (only a little with fatigue and only when doing close work), but lots and lots of GI swelling, and terrible swelling with any trauma or invasive procedure. I believe that the angioedema is rather specific to the person, in how it presents. For females, estrogens in hormone products can be contributory.

I can't help with the MG connection, but I certainly can understand the angioedema problem. I just had some dental work, and that put me in great pain (which was more extreme than the procedure), just because of the needles used to numb the area. It can seem like I am crawling out of some kind of "hole" pretty often now, that I am older! I think this is more common than the medical community realizes. So now I am very protective of myself and evaluate any invasive test or procedure. If it is not obviously needed, and only being pushed for money like the endless colonoscopies, endoscopies, etc..I will pass on those. I pass on unneeded radiation tests too.
My swelling problems (knee, ankle, belly, hands, come and go).

Some foods are triggers for GI angioedema... acidic things, fresh fruit and eggs are triggers for those with GI angioedema.

There are some very good sites about it now...one with a long paper on bradykinin, explaining how it works in the body.
I just can't find that one today.... dang.

This is one good site also:
http://www.hcplive.com/publications/...-04/2005-04_02

[Sandrine]

Thanks for the info on angioedema MrsD. My type of angioedema is autoimmune, which is a lot harder to treat, because my body has created antibodies to c1esterase, which means a lot of the great new meds aren't so helpful for me. But I am still struggling to work out what in the blazes sets off my swelling, so your post has given me impetus to research more on bradykinin. I had no idea about the fruit, which I eat often, or eggs. Unfortunately I am swollen almost all the time, only very rarely does the swelling dissipate these days, and it is very much GI and facial. Extremely uncomfortable and embarrassing. I never want to leave the house anymore.

But hardly being able to see suddenly is causing me some distress. For instance trying to use the computer now is so difficult. I have double vision and blurriness, so it's a real struggle to see and type. Especially considering it happened so quickly.

[Sandrine]

Has anyone got any help for me?

[bny806]

Welcome Sandrine!! Sorry, I'm not on here too often these days.. I don't know much about the angioedema, and I am still kind of a mystery myself (with LEMS being top of the list, I get IVIG every 3 weeks).. anyhow.. it sounds like MG could definitely be a possibility.. did they test you for MUSK and LEMS as well?'

Do you have any other weakness, or is it localized to your eye? Does it get worse throughout the day? For me I wake up and can't blink, and once I try a few times, then I can blink again.. Do you have swallowing issues? Have you gotten any of your bloodwork back? A lot of people go to neuroopthamologists for diagnosis with eye symptoms.. do you have one near you?

[Sandrine]

Thanks so much for the reply!

The neuro just did one test, for MG. My symptoms are droopy lid, double vision which used to be intermittent but just last week became permanent and really bad, although it gets even worse as I tire, the side of my smile where I have the droopy eye is weaker too, I get a hoarse voice after talking for short periods of time, heavy feeling chest like it's hard to get a breath in. Swallowing doesn't feel like I have a strong motion if that makes sense. It feels a bit weak, and like I have to be upright and let it wash properly. Often things just sit in my esophagus, and in fact I am used to that sensation - pills and food just sitting there until I wash it down with something. I also have been having these tremendous esophageal spasms that are excruciatingly painful!

I have a lot of other symptoms, many could also be part of my other illness cryoglobulinemia. I have neuropathy in my arms, hands and feet. Lately it is really bad in my hands and fingertips. It seems as though my right hand, which is my dominant side is a bit clumsier than usual. I have terrible GERD, and have had an asphyxiation pneumonia during a routine colonoscopy that almost killed me. The doctor tried to claim I had been eating - of course I hadn't. I suffer terrible daily migraines behind my eyes, and light sensitivity. I don't want to go on too much!

I am interested what other testing I should have. The opthalmologist said I have lost control of my eyes for some reason,despite still having 20/20 vision. They are weak and wander. He said it could be the cranial nerves, or MG.

I really appreciate any help I can get. My double vision is killing me, because using my iPad while I rest (which is a lot because aI have major fatigue from the cryo) was my favorite thing to do, and now it is an extreme frustration with blurring and words everywhere.

[Sandrine]

By the way, I take rituxan infusions for my cryo, and it seemed to help with the symptoms of MG, as before I took rituxan the first time, my facial drooping, breathing issues etc were very bad, and they improved dramatically. Unfortunately the second infusions haven't worked quite as well as the first however. I only get about four months of partial relief from them.

[ArtandIron]

Originally Posted by Sandrine

Thanks so much for the reply!

The neuro just did one test, for MG. My symptoms are droopy lid, double vision which used to be intermittent but just last week became permanent and really bad, although it gets even worse as I tire, the side of my smile where I have the droopy eye is weaker too, I get a hoarse voice after talking for short periods of time, heavy feeling chest like it's hard to get a breath in. Swallowing doesn't feel like I have a strong motion if that makes sense. It feels a bit weak, and like I have to be upright and let it wash properly. Often things just sit in my esophagus, and in fact I am used to that sensation - pills and food just sitting there until I wash it down with something. I also have been having these tremendous esophageal spasms that are excruciatingly painful!

I have a lot of other symptoms, many could also be part of my other illness cryoglobulinemia. I have neuropathy in my arms, hands and feet. Lately it is really bad in my hands and fingertips. It seems as though my right hand, which is my dominant side is a bit clumsier than usual. I have terrible GERD, and have had an asphyxiation pneumonia during a routine colonoscopy that almost killed me. The doctor tried to claim I had been eating - of course I hadn't. I suffer terrible daily migraines behind my eyes, and light sensitivity. I don't want to go on too much!

I am interested what other testing I should have. The opthalmologist said I have lost control of my eyes for some reason,despite still having 20/20 vision. They are weak and wander. He said it could be the cranial nerves, or MG.

I really appreciate any help I can get. My double vision is killing me, because using my iPad while I rest (which is a lot because aI have major fatigue from the cryo) was my favorite thing to do, and now it is an extreme frustration with blurring and words everywhere.

There's more than one test for MG. My neuro just ran one for the MUSK antibody and said it was the most likely to be positive because my symptoms are most prominent around my face, throat and chest. I have a 4th nerve palsy (which sounds similar to your "wandering eye"-- the ophthalmologist said that the muscles that control the eyes are weak and can't hold both eyes on track, especially late in the day), difficulty swallowing, difficulty breathing (feels like so much work to take a full breath), and some weakness of the facial muscles.

They did a repetitive nerve study and a standard EMG on me-- they've discussed doing a single fiber EMG but are waiting for the symptoms to get bad again. I had a bunch of testing with pulmonology, a modified barium swallow to watch my throat muscles work, an echocardiogram to rule out pulmonary hypertension, and an MRI and CT to rule out tumors and MS (that was very early in the process when my only symptom was double vision).

My neuro mentioned an ice pack test and a Tensilon (?) test that can be done in the office, and he gave me Mestinon to try and told me that it's partly diagnostic.

I hope some of that helps-- I'm brand new so I don't know much yet, just what they did for me.

[kiwi33]

Hi Sandrine

I can't say anything sensible about your possible MG and acquired angioedema II but, as somebody (day job) who knows quite a lot about immunology, but not as a clinical health professional, here are some thoughts about your cryoglobulinemia:

Broadly speaking it comes in three forms.

Type I is often associated with neoplasia like multiple myeloma or Waldenström macroglobulinemia - getting your GP to refer you to an oncologist could help here.

Type II is associated with Hepatitis C virus infection - seeing a liver specialist might be of benefit.

Type III is linked to autoimmune diseases like systemic lupus erythematosus and rheumatoid arthritis. A specialist clinical immunologist should be able to investigate these possibilities.

[Sandrine]

Hi Kiwi,

My cryo is well understood and being treated as discussed with rituxan. I came here for help with MG. Thanks though! Same with my aquired angioedema.

Art and Iron,

It sounds like you and I are having very much the same kind of symptoms. So it's the 4th nerve is it? My neuro ran the other MG test, not the MUSK one. Oh well, I am seeing another neuro on the 13th. It seems forever to wait when seeing double and feeling so crappy.

Wow your neuro is totally onto it! Seems like they are doing everything under the sun. I have an MRI with contrast scheduled. My PCP arranged it, in case something is pressing on my nerve.

Have you got any kind of results showing anything yet?