Update: No Diagnosis

[Totmama]

Went and got seen by the neuro Opthamologist and there was no diagnosis. 2 days prior, I was laid off from my job. So I will be uninsured very soon (we’re going to have to switch me to my husband’s insurance).

The technician who ran the tests looked at my optic nerves and said ‘oh, they’re swollen.’ The eye pressure in my left eye is 28 and in my right it is 25.

The Neuro Opthamologist said that he doesn’t see MS but he was unable or unwilling to make a diagnosis as to what happened with my eyes. No MRI was ordered. He did pooh pooh the idea of thyroid eye disease and was more focused on MS. He believes it has nothing at all to do with thyroid which I do agree with.

So, I have a follow up in 6 months. He wants to see how my eyes are doing then and reexamine for signs of MS.

I’m just not sure, I want to be happy because he thinks it’s nothing, but I just struggle to find myself fully believing that. I’m having symptoms and having had the severe eye pressure I had has me worried about my sight and it can’t be normal for my left leg to suddenly go stiff, hot and painful. Logically, something is going on.

I don’t go to the doctor. I grew up without medical care and so I always figure that if I’m breathing, I’m good. It drives my husband absolutely nuts.

I just don’t know and I guess I just wait from here. Very frustrated. I just wanted an answer and got nothing other than the eye pressures and what the tech said.

[Totmama]

Edit: He did ask if anyone has Glaucoma or eye issues in my family (no one does) and seemed surprised when I said No. And, wouldn’t Glaucoma be odd in someone in their 30s? Not saying it couldn’t happen but I haven’t heard of it in younger people.

[lbenmaor in reply to Totmama]

I am so sorry you are going through this. I believe there are drops for your eyes to prevent Glaucoma and keep your pressure down.

Leslie

[Totmama in reply to lbenmaor]

I just wish I had an answer rather than wait another 6 months, you know? The waiting is torture

[bxrmom in reply to Totmama]

You may want to get a 2nd opinion if you are not comfortable with what the Neuro Opthamologist has said.

[Totmama in reply to bxrmom]

I can try but I’m about to have an insurance gap until I get on my husband’s. I won’t be able to see another Neuro Opthamologist as he was the only one in my part of the state

[bxrmom in reply to Totmama]

Totmama I'm sorry to hear he was the only Neuro Opthamologist in your part of the state

[CatsandCars]

Have you had an MRI, Totmama? This is a link to the Mcdonald criteria for diagnosing MS. You'll see it if you scroll down a bit. If you haven't seen a neurologist, I would recommend doing that. MS is terrifying, but MS that's diagnosed and properly treated with meds is less so!

nationalmssociety.org/for-p...

Hang in there! I hope you get a definitive answer soon.

[Totmama in reply to CatsandCars]

No mri yet, the Neuro ophthalmologist is having me wait for 6 months and then he’s going to recheck my eyes for ms and glaucoma symptoms. He refused to diagnose but did go so far to say he doesn’t think it’s thyroid related and he stuck to what sounded like screening questions for ms and glaucoma.

[CatsandCars in reply to Totmama]

I feel bad telling you this, but you should see a neurologist, and it would be even better if they are an MS specialist. I was diagnosed by a neuro ophthalmologist, but he gave me an MRI, so it was a one day thing! There's a good chance that you don't have MS. And having MS is not the end of the world. but it needs to be treated promptly. I don't think it's ethical to make you wait six months to get an MRI; that could potentially be six months of very effective treatment that you could be missing out on if you do have MS. It's just not a good idea to wait. Your doctor is pussyfooting around when you should be getting diagnostic tests now. Forgive my bluntness, but you need to know this. I know thinking you may have MS terrifying, but we've got you. We will support you through whatever happens, and you can message me whenever you want. Just get checked out by a neurologist ASAP. You can search for one here, but I recommend checking reviews online before seeing one. And please keep doing what you're doing and let us know what'shappening. ❤️

nationalmssociety.org/resou...

PS It can take a while to get an appointment, so be sure to ask if there's a waitlist so that if someone cancels, they can see you sooner. Also, it's okay to make an appointment with more than one doctor if it can help you get in sooner, as long as you cancel within a few days if you're not going to go.

[Blanketttime1 in reply to CatsandCars]

yes! that's what bothered me. if your optic nerves are problematic, why wouldn't he at minimum order a brain mri? i've been in limboland forever!! one of the things i did wrong early on was listen to the neuro, when my gut was yelling at me. dunno how much time you've spent with them, but neuros tend to be arrogant sob's with god complexes. i've wasted time on neuros in the past who sort of hemmed and hawed while i got worse. at the very minimum, if you have access to your husband's plan info, make an appointment now with a neuro whose speciality is ms. they tend to have long wait times, so even if you can't see them for 6 months, at least you can show up when you fall under his plan with your optic test results and give them to your new neuro.

[CatsandCars in reply to Blanketttime1]

I'm sorry you still don't have a diagnosis with all of the problems you're having. I can't even imagine how hard that would be.

[Totmama in reply to CatsandCars]

Thank you! It is, I just want to be taken seriously and I definitely feel like I’m not being taken seriously because I’m female, in my 30s, baby faced and overweight. It’s very frustrating. I have a toddler, I need my vision to be in good shape. My left leg cannot afford to go stiff, I have to be able to run after my kid.

[CatsandCars in reply to Totmama]

I don't know, Totmama. You could be right; I do think that while youth might be part of dismissing the glaucoma, but MS is known for impacting young people. It sounds to me like this doctor is a lazy, arrogant SOB who doesn't care about his patients at all, so it might not have anything to do with your age or your weight. I can only imagine how frustrating it must be to possibly have two serious conditions and have this experience. I'm so glad that you have the good sense to seek other opinions, though! Advocating for yourself is so important.

[Totmama in reply to Blanketttime1]

I think he was saying that he himself didn’t see swelling in the optic nerves, which, I’m fine with that. The first optometrist said it was subtle and she spent time zooming in and out on the entire optical nerves. But if the eye pressures that the tech told me are correct, then I don’t understand why he didn’t order eye drops, that seems straight up negligent.

I’ve only seen him once. I had been to that eye clinic before and hated it, they were dismissive years ago but they are the most medically advanced eye clinic in my area, so didn’t have much choice.

I also am fairly certain he was judging me based off of my weight. I’m overweight but that doesn’t mean I don’t know my body. I used to be extremely active and fit and I have been walking everyday so the fact that he was dismissive over my leg….

[CatsandCars in reply to Blanketttime1]

I just realized I used the same words as you did, arrogant SOB. 😆 If the shoe fits, right?

[AquaZumbaFan in reply to CatsandCars]

Great advice CatsandCars!! I second that!

[Blanketttime1 in reply to AquaZumbaFan]

"arrogant sob" indeed! there are entirely too many like that. Totmama i stopped even trying for a diagnosis for about 5 years because i got so fed up of their dismissing me. don't do that! places like this are so important because it helps you realise you aren't alone with these experiences. every once in a while i'll read on here how someone had a numb hand, saw a neuro, did the scans and got diagnosed. and yep, they're always men. it sux.

[Totmama in reply to Blanketttime1]

I’m definitely being written off and it sucks because I will be terrified if I have another eye attack.

[Xvettech]

I’m sorry. I know this is frustrating. I agree with cats andcars. I’m sorry! I know how aggravating it is

[Brindisi1]

I agree with everyone. Your eye pressure is too high. There are a lot of conditions that can cause it, including glaucoma or other things. Since this neuro ophthalmologist was just focused on determining if it was m.s or rnot & not doing MRI is incorrect. He should look for what's going on. Please follow-up. N ow not 6 months from now and get a second opinion. I have a real good doctor in Houston who is just an optometrist, but specializes in glaucoma and my eyes were at about 20 and he was like upset and put me on 2 drops. Anyway, let us know what happened prayers for your recovery.Getting a correct diagnosis critical- easier said than done.

[Totmama in reply to Brindisi1]

I agree, when I Google the eye pressure (I know , I know lol) all I see is that it considered moderately high. I was fully expecting eye drops to bring the pressure down. I’m not sure if it will be easy to see another doctor, though, if I can get my hands on the medical records that state the eye pressures, I’m thinking that might help

[Humbrd]

Get a second option with a opthamologist! If it is glaucoma you cannot wait 6 months with high eye pressure. I was diagnosed with glaucoma in my early 40s. It's never too young to have it. My first eye exam showed high pressure and he said let's check again next year. Several months later I decided to get a second opinion and it was still high and that doctor put me on eye drops. I said no, I did not have it in my family history. But later on my mother did tell me that my grandfather had glaucoma so I was wrong. In my 50s I had optic neuritis and that led me to the path of eventually being diagnosed with MS.

[Totmama in reply to Humbrd]

I will have to get on husband’s insurance but I can probably get an appointment with an Opthamologist, there are a couple of those in town. I tried to get access to the eye pressure records but they didn’t document or log them. Today I’m going to reach out and ask what my eye pressures were again and request a document (then I can take that to another doctor)

[Humbrd in reply to Totmama]

I'm glad to hear that you are going to follow up as soon as you can. If you need treatment it's better to do it sooner than later. Good luck 🤞

[NanciG]

I am so sorry that you had a bad experience with the neurophthalmologist. They are usually very detailed. While MRI's and neurologists can be helpful with a final diagnosis, the most important thing is to get your eye pressure down within a normal range ASAP! If you wait six months, you can have a lot more wrong, including permanent vision loss.

I have had ongoing eye issues in just one eye for several years. It's related to the MS, but isn't directly caused by it. I have found that the only doctor who has correctly and safely addressed fluctuating pressure in my eye has been a retina specialist. I went to a regular ophthalmologist for a couple of years who had me on the wrong type of eye drops. Finally got to someone who knew what they were doing and it has made all the difference in the world.

I suspect that if you call around to get an appointment and tell them how high your pressures are, they will get you in very quickly! Every medical practice has some appointments set aside for emergencies and your pressures are considered high. Be persistent.

[Totmama in reply to NanciG]

I just looked at the medical records online and they didn’t even document the eye pressures which is such a failure it’s horrifying. Very tempted to demand documentation of the pressures.

[NanciG in reply to Totmama]

Just leave the quack behind and spend your energies finding a good doc. Look forward and shake it off. Yes, stress or anxiety can impact eye pressure--but you don't really know if that's what happened because the doctor clearly didn't take you and all of your physical symptoms seriously. Time to see someone who knows what they are doing and who cares about your overall well-being.

[Humbrd in reply to NanciG]

Good you have a retinal specialist in your area. I used to see a optic neurologist, but he left a couple years ago. There's not another one around in hours that I found. I do see a glaucoma specialist and a retinal specialist for vitreous detachment. But no one who specializes in optic neuritis.

[Totmama]

oh and for funnies: The nurse told me to relax, that because I looked nervous, that was driving my eye pressure up (really? 😂) I almost laughed.

And historically, I have always had low blood pressure.

[kdali]

An optometrist can recheck your pressures. Mine is checked every 6mo by somebody, every 3 months if there's a concern they are monitoring, and every month if there's a problem. Sounds like your leg issue wasn't addressed at all, so a neurologist would be a good idea.

[Totmama in reply to kdali]

Yeah, the leg was weird and I even checked my face for drooping when it happened to make sure it wasn’t a mini stroke. The Neuro Opthamologist asked me if I fell down and I said no because I balanced on my right leg and he was like ‘So you didn’t fall down?!’ As though only if someone falls down is there an issue. Like what? And then he said ‘so, you could walk?!’ And I said ‘sure, limping and I couldn’t cross my legs because I couldn’t lift my left leg…’

[JTZES]

You need to see a regular Neurologist. Not an eye specialist. I understand the issue is with your eyes but a Neurologist would have ordered a MRI to look for anything related to your eyes as well look for any other signs of MS.It sounds like you self diagnoses prompting you to go to a Neuro Opthamologist. You need to start at the beginning and fallow your Dr's recommendations.

[Totmama in reply to JTZES]

There was no self diagnosis. The words MS and Thyroid came from an urgent care physician who works for a research hospital. He referred me to an optometrist who used the words Autoimmune Disease and Thyroid, the optometrist referred me to the neuro opthamologist.

Without a referral, I can’t get seen by a neurologist.

[stepsforNeeC]

I am so sorry you are going through this and I am not comfortable with you waiting for the MRI! Please research into your State and even local hospitals for extreme medical necessities and how provisions may be made! Maybe because you have a “Gap” a sliding scale fee can be offered to you for this one procedure. Many hospitals have what’s called Discretionary Funding for patients with extreme circumstances! Now do they tell patients this no….absolutely not only during extreme conditions! I used to be a Social Worker and a caring one, that’s why I had to stop working because my MS was catching Hell for the other people the in field who lack compassion ❤️and love! I will continue to pray and for your healing and comfort, please look to the getting MRI so you can get your answers. Peace and blessings. NeeC

[Totmama in reply to stepsforNeeC]

I can check, I do think that because my husband will be placing me on his insurance, they will probably say no. I also checked to see if I qualify for any public health insurance but I won’t because of my husband’s income. Today he is going to check his benefits and take a look. In the meantime, I can’t have anything medical happen! I’m trying to take it easy and just relax.

[stepsforNeeC in reply to Totmama]

Okay, I been in your space before; just trying to see what options you may have so you won’t have to wait 😞I have my MRI tomorrow, pray for me I now make my Neurologist prescribe something to help me be a little sleepy or else I’ll cry!!! It is what, what it is my friend! Take care of yourself. NeeC