I Need Advice of Forum Members

[Judee]

One Optometrist told me about graying of vision, mentioned in this article here: https://www.webmd.com/multiple-sclerosis/multiple-sclerosis-vision-problems

He said what happens is red doesn't look like red anymore; it starts looking like gray.

I mentioned my worries to him for the same reason; because MS has similar symptoms and I get Anisocoria (one pupil much larger than the other) and very bad double vision sometimes. Plus my eyesight is worsening more quickly now and it varies from day to day.

Edit: I did wonder about ocular MG too because my one eye gets droopy later in the day.

 

[rel8ted]

The problem with these symptoms is that they wax and wane. So st the time I saw the neurologist, I had improved to the point where I could walk a straight line. So she pronounced that no more tests needed to be done. “Have a nice day!”

My policy is "never put a comment in my medical record that you don't intend to discuss on my next office visit"
Since the neuro only saw me take about 10 steps, I was shocked that he said my gait was fine. He said my voice was fine in spite of the fact that he could hear me respond to a question and then the next time, my voice would fade out & he had to ask my husband what I said.
I ride a scooter bc I waddle at best and have occasional issues staying on my feet. My gait looks like a drunk toddler

But it has only been in the past few months that I began to notice vision changes. At first, I thought I needed new glasses, so had the eye exam, bought new glasses, but that only seemed to make things worse. And then I keep going back to “Well, it is just my imagination.” And I compensate by just not going out of the house, or anyplace I have to walk. Because I don’t want to fall down. But I am having headaches now all the time that seem vision-related—and I have never been prone to headaches.

Does your lid droop at all? Mine is so bad at times it effect my peripheral vision and riding in a car is like being at an amusement park. Every time a car passes, it scares the life out of me bc I didn't know it was coming. No more driving for me. I need to start patching so that doesn't happen, but I get tire and forget to order one.

Also, do you know if you are having double vision? I have seen patients sometimes think that their vision is just blurry, when it is double. You could let the eye doc know that RX is not working out and you think you are having double vision issues. If you are, it should clear up if you close one eye or the other. It drives me nuts!!! Sometimes it starts very subtly and I keep thinking my glasses are dirty, them BAM! My brain sees 2.

You may also have one eye that is moving off to one side (inward or outward). Patching will relieve some of the strain from that in the short term, but the eye doc likely would have noticed that if a thorough exam was done.

And I sometimes wonder if this is MS—the symptoms are similar. But I always thought that MS was straight-forward—not like CFS. Now I find it is not

I have been checked for MS a couple of times and had a couple of clear MRIs a few years apart. It seems like bc I don't have the disease they wanted me to have, the docs don't want to find out what IS wrong.

 

[Gingergrrl]

In medical school, many doctors learn the saying, “when you hear hoof beats, think horses, not zebras.”

I love this quote and my doctor once said my case was so weird that I was a zebra among zebras. My niece compared me to a zebra-unicorn or "zebra-corn" and I now have a stuffed animal zebra-corn. Sometimes we had to laugh and joke about it to not cry!

Also here is the page for doctor's listings for Dysautonomia International: http://dysautonomiainternational.org/page.php?ID=14 (scroll down the page to see the USA doctors)

If I could see any autoimmune/ dysautonomia specialist in the world, I would see Dr. Jill Schofield or Dr. Stephen Vernino (neither are in my state and both have waiting lists several years long)!

I know she went to neurologists at the Scripps Clinic in San Diego

@AngelM Do you know if your daughter was helped by the Neuro at Scripps? I did a one-time consult with a Cardio at Scripps in 2015 (Thomas Ahern who is also on the Dysautonomia list above) and he was very nice. He felt that in addition to POTS and MCAS, I had some kind of muscle disorder. He compared it to muscular dystrophy but expressed very clearly that it was NOT muscular dystrophy, he just did not know what it was. He wanted me to see a Neuro at Scripps but I did not pursue this b/c Scripps was 3.5 hours south of me and at the time, I believed that I could find a local Neuro who would take my case seriously (but I never did). I also did not learn until 2016 that I had the CA+ Channel autoantibody that linked to LEMS (plus several others) and had no idea yet that my case was even autoimmune.

My policy is "never put a comment in my medical record that you don't intend to discuss on my next office visit"

I like that . BTW, @rel8ted are you in the area of Hurricane Florence? Hoping you are safe.

 

[rel8ted]

@rel8ted are you in the area of Hurricane Florence? Hoping you are safe

Far enough inland that it's just dreary and raining. If it had been a 4, that would have been a different story.

 

[AngelM]

@rel8ted
You have such a good attitude about everything. Makes me feel like a “whiner.” The double vision has occurred only a couple of times—and did not last long each time. It surprised me more than anything else—because it had not happened before. I noticed on the computer that there were two lines were where only one should be. I blamed it on my glasses. And the fact that the computer is in that “middle vision” range that has always been difficult for me. And it cleared up rather quickly. More dramatic has been the blurred vision that seems to come out of nowhere. It is almost like my eyes suddenly stop adjusting normally. And that is followed by dizziness.

I do not have an obvious droopy eyelid. But my eyelid droops on the left side and has for some time. I first became aware of it when a doctor asked me if I have had a stroke. Then I began to notice the difference between my left and right eye for myself when I was applying mascara.

I have become afraid to walk any great distance because my feet do not come up off the ground normally without great effort and concentration. I think it is that “concentration” on my legs is the reason my gait seems normal when checked by the doctor. If I forget to think about my feet, I will trip, because my feet, especially my right foot, does not come high enough of the ground and it catches on the ground—almost like “scuffing”— and I nearly fall. This, along with the lack of balance, makes me look like I am drunk. I also have trouble navigating around objects. My feet don’t seem attached to my body, and I will inevitably trip. Yesterday, I fell stepping over a something I step over every day.

I am mostly writing this to clarify what I will tell the doctor when I see him in a few hours. I’m quite certain that my results will be the same as yours. I’ll see a number of specialists, including another neurologist, and they will tell me they can find nothing physically wrong. That it must be an hysterical disorder of some kind. You hear it so many times that you finally begin to believe it—even though the symptoms are real. Most of this week has been miserable, with muscle pain, spasms, on top of the debilitating fatigue. But yesterday I began to rally, and am improved. Just in time to see the doctor! But I don’t know when and where it will happen again. And that is what scares me. It also keeps me isolated. That, and the fact that, after what happened last year with the neurologist telling my family there was nothing wrong with me, I can’t afford to tell them about these new symptoms—they would never believe me.

I have thought about asking the doctor to refer me for physical therapy. Perhaps working one on one with a therapist would at least get me back on my feet. Sorry, this is so long. I am desperate to talk to someone. Thanks for listening to my “whine and cheese.”

I love this quote and my doctor once said my case was so weird that I was a zebra among zebras. My niece compared me to a zebra-unicorn or "zebra-corn" and I now have a stuffed animal zebra-corn. Sometimes we had to laugh and joke about it to not cry!



If I could see any autoimmune/ dysautonomia specialist in the world, I would see Dr. Jill Schofield or Dr. Stephen Vernino (neither are in my state and both have waiting lists several years long)!



@AngelM Do you know if your daughter was helped by the Neuro at Scripps? I did a one-time consult with a Cardio at Scripps in 2015 (Thomas Ahern who is also on the Dysautonomia list above) and he was very nice. He felt that in addition to POTS and MCAS, I had some kind of muscle disorder. He compared it to muscular dystrophy but expressed very clearly that it was NOT muscular dystrophy, he just did not know what it was. He wanted me to see a Neuro at Scripps but I did not pursue this b/c Scripps was 3.5 hours south of me and at the time, I believed that I could find a local Neuro who would take my case seriously (but I never did). I also did not learn until 2016 that I had the CA+ Channel autoantibody that linked to LEMS (plus several others) and had no idea yet that my case was even autoimmune.

 

[AngelM]

@Gingergrrl
My daughter continues her care at Scripps neurology because her MG neurologist is 3000 miles away. I believe as she saw her MG symptoms worsen she was not happy with the MG treatment options they offered. She wanted a thymectomy, and because the surgery is controversial (doesn’t always work), the docs at Scripps would not do it. Fortunately for her, the operation did work, and she has not had to start the steroid therapy they recommended at Scripps.

However, I have thought about going to the Scripps Clinic (among all the things I am considering) because my daughter lives in San Diego. I wasn’t sure what kind of doctor to look for since I am totally confused about what is actually going on with me. I have always assumed I had was textbook ME/CFS, (I was diagnosed with it) but with all these strange new muscle symptoms presenting, maybe there is something going on in addition to the ME/CFS.

 

[rel8ted]

You have such a good attitude about everything

I promise that is not always true. Also, I am fortunate to live in a sort of fantasy land where we ave chosen not to surround ourselves by negative family members and people. It's just very mindful. Before I got sick, we worked with kids that came from "not the best home situations" (trying to be tactful), so that kind of gives a different perspective on things. I saw one of those moms take a closed fist swing at a kid and I promise my attitude was less than perfect then . I have days when I feel sorry for myself, I just try not to stay there long.

This, along with the lack of balance, makes me look like I am drunk.

Yes, I say I look like a drunk toddler. I have noticed people watching me when I walk now. The ones who know me, I think are used to me weaving and stumbling, so they probably are trying to be ready for a change of course if I suddenly come in their direction.
I always wonder what the strangers think though.
Last night, I had a narrow miss with a very heavy commercial door, a fountain, and a wall - all in the same building, on the same bathroom trip.
We also joke that I can trip over a line in floor like nobody's business. With hardwoods, that leaves a lot of tripping to be done.

More dramatic has been the blurred vision that seems to come out of nowhere. It is almost like my eyes suddenly stop adjusting normally. And that is followed by dizziness.

That is how I was describing double vision to my hub before my neuro exam when I could no longer deny it was frank double vision. I think it began subtly and I didn't realize it at first. That happens with glaucoma patients - some go blind so gradually they never notice until it's too late.
And, ditto on the dizziness plus slight nausea.

spasms

That does not seem like a mainstream MG symptom

after what happened last year with the neurologist telling my family there was nothing wrong with me, I can’t afford to tell them about these new symptoms—they would never believe me.

I am amazed at the number of people with family members that live with someone and see them everyday, yet believe the docs when they say "nothing wrong." There IS something wrong, that doc was just unable to find it.

I have thought about asking the doctor to refer me for physical therapy

I forgot to tell the neuro about me flunking PT. I could do the exercise maybe in the first 2-3 tries, but then 4-10 were a no go bc my muscles would stop working right. I figured it was bc I was diagnosed as "fat, lazy, and out of shape', but I think knowing what I know now, it may have been neuromuscular. The PT said she had never had a patient flunk out, but I was clearly fatiguing so fast that she was scared to continue therapy.

her MG neurologist

Could you try there? I know it's far, but....

I can't do the plane thing so I have to be able to get there by car. The last plane trip I took was not good and I don;t think I could deal with all the airline drama these days.

You may be able to get a doc recommendation from one of the MG facebook groups. Maybe you'll even find one closer to home. A neuromuscular specialist may be an option if not MG.

 

[Gingergrrl]

Thanks for listening to my “whine and cheese.”

You are not whining, you are trying to be your own doctor and advocate and get to the bottom of these horrible symptoms that have interrupted your life. I completely relate and when I joined PR in 2014, I was desperate to figure out what was wrong with me.

@Gingergrrl My daughter continues her care at Scripps neurology because her MG neurologist is 3000 miles away. I believe as she saw her MG symptoms worsen she was not happy with the MG treatment options they offered. She wanted a thymectomy, and because the surgery is controversial (doesn’t always work), the docs at Scripps would not do it. Fortunately for her, the operation did work, and she has not had to start the steroid therapy they recommended at Scripps.

I wanted to clarify one part that I am not sure if I understood ... the Neuros at Scripps would not do the thymectomy b/c it is a controversial surgery so did your daughter have to travel 3000 miles to see her original Neuro for the surgery or did Scripps finally agree to do it? (In either case, I am so glad that it has worked for her)!

However, I have thought about going to the Scripps Clinic (among all the things I am considering) because my daughter lives in San Diego. I wasn’t sure what kind of doctor to look for since I am totally confused about what is actually going on with me.

I assume that you would see a neuromuscular specialist. I saw a Cardio at Scripps in 2015 who referred me to a NM specialist but never saw her b/c I was extremely ill at that time and Scripps is 3.5 hours south of me by car. I wondered at the time if I was doing the right thing, and if she could have helped me, but I never saw her.

Her name was Dr. Chamindra Konersman and I found a link: https://providers.ucsd.edu/details/32466/chamindra-konersman-neurology-san_diego in case it is helpful for you. It looks like she must practice at more than one site. I cannot give any opinion b/c I never saw her but if she had been in LA vs. SD, I would have pursued it at that time.

I have always assumed I had was textbook ME/CFS, (I was diagnosed with it) but with all these strange new muscle symptoms presenting, maybe there is something going on in addition to the ME/CFS.

I wouldn't assume anything at this point and would leave all options open. I was diagnosed by multiple doctors with "CFS" in 2013 starting w/my PCP, then specialists, and even a psychiatrist. I saw the psych just to be certain and he said I was "not depressed" and my symptoms were medical; tachycardia, incredibly low blood pressure, hypothyroid, post-viral weakness & fatigue (at that time), etc, and even he said it was not psychiatric and it was "CFS".

Even after I was diagnosed with confirmed POTS and Hashimoto's, I still had a CFS diagnosis and I finally accepted it. But I got sicker and sicker until I could no longer work and was using wheelchair 24/7 b/c of increased muscle and breathing weakness and worsening POTS. Ironically, it was my main doctor (who is an ME/CFS specialist) who finally said, "I don't think you have CFS" and helped me to figure out what was going on. The Neuros were useless EXCEPT that one discovered I had the calcium channel autoantibody and possible LEMS.

The Neuros washed their hands of me and were done vs. my ME/CFS doctor felt that the autoantibody info was incredibly important and pursued it until we got answers and the correct treatments. I cannot emphasize enough not to quit looking. And if it turns out that you have textbook ME/CFS with no other co-morbid conditions, then no harm done for searching and confirming this.