I’m a female, in my 30s and looking for a little support as I freak out about an upcoming doctor appointment.
Long story short, I have diagnosed hypothyroidism and have been treated for years for it. Low thyroid is my issue (important fact). My MD referred me to an endocrinologist, who is declining to see me as she says my thyroid is fine.
About a month ago, I had what I can only describe as an eye attack. Both of my eyes in the morning were feeling odd, then over a matter of hours I developed a migraine and severe pressure and some pain behind the eyeballs. I also had nausea. It felt like my eyes were going to pop out of my head.
Urgent care mentioned thyroid or Graves but said that didn’t make sense. And then he tried to talk to me about Multiple Sclerosis. He sent me for a CT which showed nothing at all. And off I went to the optometrist.
At this point, I was thinking it might be allergies. The optometrist said that my eyes look great, but she also took a very close look at the optic nerves and found swelling (and signs of recovering) in my left optic nerve (optic neuritis). She mentioned Thyroid and then mentioned that it could be ‘other’ autoimmune diseases that attack nerves. She referred me to a neuro ophthalmologist, who I see in 1 month.
I’m not really sure where to go from here and frightened. I do have symptoms, some I have had for years (listed below). I have been stumbling more and even fell yesterday with my toddler in my arms (I landed on a coffee table luckily). My biggest concern is that the providers who have seen me so far are concerned, there’s this feeling that they suspect they know what it is. I sensed pity from them. I’m terrified of what I’m going to be told.
Has anyone else had a similar experience? What should I expect?
symptoms:
Fatigue, Back pain, Joint pain, falling down/swerving, stuttering, using the wrong words in sentences, Charley horses in legs, left optic nerve swelling, new symptom of having difficulty getting out of my car (pain/tension in the hips and back).
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Totmama
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Hi! I’m sorry for your fall with your toddler. I’m sorry for you both. I have had a similar experience and some drs are slow to say. I believe they don’t want to be wrong. They are probably being careful to avoid a lawsuit. Maybe they aren’t allowed to diagnose. Idk. But I do know it stinks. They ultimately are messing with our well being to cover their own butt. I’m sorry you are going through this. It’s rough. I had lots of MRI’s with and without contrast and lots of bloodwork. Everyone has a different experience and I wish you the best!
Thank you! yeah, it’s probably liability. Mostly it’s just so anxiety inducing and my left eye still feels wonky so it’s like this constant reminder that something isn’t right 😔
No anxiety! It makes the MS worse! Of course that’s easier said than done and I’m probably the pot calling the kettle black. lol. I have bad anxiety. The only way I can battle it is my new f it attitude. lol! Probably not the best way to handle it but with me it’s all or nothing. I do hope you have better results!
I felt the same way. I just wanted to know what was happening to me! I had optic neuritis in my left eye and that’s what finally got me the MRI that determined that I have MS. My PCP was sure that I had Lyme’s disease but the ophthalmologist said I needed to have an MRI because I might have MS. I was diagnosed in 1999 on my 30th birthday. I had fatigue and dizziness, brain fog, tingling in my left leg, sensitivity to light, loss of balance- tended to veer to the left. I also have hypothyroidism. I hope you find out soon what you are dealing with. I’m sorry that you are going through this. I hope you have support. I’m praying for you. Let us know what happens.
The diagnosis of a neurological illness is complicated. Doctors hesitate to mention what diseases are in the "differential" because it will upset and confuse most people. It has nothing to do with "avoiding a lawsuit" or "covering their own butt."
I can see that. The urgent care doctor was so gentle when he tried to bring up MS. He was quiet for several minutes like he was pondering something, looked a bit sad, then said something along the lines of ‘The other thing that is sometimes seen with eye issues like this is something called Multiple Sclerosis, it’s an autoimmune disease’
I cut him off and he quickly retreated on discussing it (that’s a me issue, he approached it the absolute best way)
I do not have MS but as a retired educator who helped my parents when they were sick,I get you and am on your side. Get yourself a lawyer or a Nurse who specializes in Medical Legal issues. You can also discuss this with your insurance company. They can all assist you with some vital information. Docs in the good old days like our family doc who served under George Patton(yes,I know because he had lots of photos of docs that he worked with in the ETO during WWII) do not exist on this earth anymore. This type of back-up with insurance companies,social services along with others can help you navigate the system. Also had a student who's mom had a serious disease so I care.
The doctors I saw were careful not to say what they thought it might be until they had it really close to being one thing or another and I was down to one last test (the lumbar puncture).
It took a while to get the doctors to take me seriously, my main symptom was severe dizziness and brain fog. It took me nearly falling off the doctor's table for her to send me to specialists and get tests done.
I don't think it sounds weird at all that it would be a relief to know what your diagnosis is. When I was waiting to find out, I felt the same way. The not knowing was awful. Finding out was, at first, a relief. Because then we could plan and at least have a course of action, instead of just test after test, and not knowing what medications to go on.
I’ve just been suffering for so long. If it ends up being MS or another autoimmune disease, it’ll explain the last 15 years. I’ve been thinking more and more about my symptoms and realizing how much I push through.
My exhaustion has been so intense that my legs feel like lead.
Welcome to the forum, Totmama . The wait for a correct diagnosis is excruciatingly long. The doctors want to get it right. It took a long time for my diagnosis. You can visit mymsaa.org for resources related to ‘ms’. I look forward to hearing more from you.
Hi! I’ve been dealing with symptoms for quite a while. I’ve been blown off so much. I actually had a psychiatrist (who is treating me for depression) say ‘Okay, this is NOT psychological, there is something going on with your body and you need to be seen by a specialist. This level of exhaustion is not normal.’
I actually appreciated that. It was nice having someone say, hey, this isn’t normal
I understand all too well, Totmama . I had many doctors who told me that it was all in my head. My PCP is the one that ordered an MRI, not my neurologist, and discovered all my lesions. I just wish that it didn’t take so long to find them! Keep insisting that they continue to search for what ails you. Keep notes of everything and tell them of all your symptoms, someone has to solve this mystery!
Yeah, the swollen optical nerve is the first undeniable symptom that I’ve had. Everything else has been ignored. I’m so grateful to the optometrist and how she was just like ‘Yeah, I can see that something happened with your left optical nerve. There’s a some swelling like something happened. Let’s get you a referral to an neuro opthamologist’
I had the opposite happen, In my 20s I had something called Uhtaf phenomenon with my eyes and dad being a physician knew something was up. My dad wouldn’t leave it alone and eventually I went to a Neurologist. He didn’t say anything until after the MRI came back, then he used the “legions” on the brain mri to confirm MS
Is it possible for you to schedule with a Neurologist office directly? It sounds like the office you go to isn’t making you happy, can you get a second opinion?
The Uhthoff phenomenon is a temporary worsening of neurological symptoms lasting less than 24 hours that can occur in multiple sclerosis patients due to increases in body temperature.
I tried to bypass the referral process but unfortunately the specialists refused even though my insurance doesn’t even require referrals for specialists.
My doctors office did call me yesterday evening. And I basically started complaining that I think it’s ridiculous that I can’t get seen by an endocrinologist and a neuro ophthalmologist. I pointed out that thyroid has been mentioned by all providers as well as Optic neuritis, so logically, both should be investigated.
I say you stop depending on them. Is there a second doctor network in your area? You need to go somewhere else if you can. Your current place seems to be giving you the runaround and thats unacceptable.
It’s really hard to get seen in my area, most physicians are booked out a full year. I’m brand new to my new pcp and he is a young young doctor just out of med school but I’m lucky to have him.They are going to try the second hospital we have in town, but if I can’t be seen by an endocrinologist there then I’ll be SOL, I do think that because I’m being seen by the second hospital’s neuro opthamologist that they might be more willing with the endocrinologist referral too. The second hospital is technically a research/college hospital
Welcome! I think the next thing you will do is MRI scans after the ophthalmologist sees you. I have had optic neuritis way too many times 🙄 But, I have tips! Taking eye breaks during the day may be helpful for discomfort and prevent further eye strain. I have worn an eye patch before, that works too. I made my own by cutting a black sock toe off and sliding it over my glasses. I was very pregnant and looked like a ridiculous pirate. My then toddler thought it was great and my knowledge of pirate phrases came in handy. Sunglasses indoors or in stores may help if the light feels too bright. During my eye breaks, I would sip coffee; I don't know why it helps but I'm not the only weirdo that does this 🤣
Might not be pity. It may be that the providers are genuinely concerned that something serious is up, and they can't help you but wish that they could. There's a lot of nothing good that fear and worry can do to you while you wait for answers. I'm a fan of distraction, and playing with toddlers is a great one! GL to you! I hope you will let us know about your visit.
Haha, a coffee eye break actually sounds great. I go heavy on the caffeine as it keeps me awake! I do think I’m headed for an MRI. I did have a CT though and that was clear, wouldn’t a CT have shown something?
MS can be seen on a CT scan, or missed. There's more helpful detail with MRI images, and the order will likely include your c-spine. If nothing is seen, it's common to check again in 6mo to make sure it isn't MS, as sometimes it takes time for lesions to show up or be large enough for the scanner to catch. This is all moot if your MD thinks it's something else, but they would likely order a set of scans just to rule it out. It's a lot of hoops, worry while you wait, then hurry up and jump again 😵💫
Thank you! I’m hoping I get some answers. I told my husband that all I want is an answer so if I end up losing sight in my left eye eventually, then I can prepare and obviously prepare if it’s something serious. Having a toddler makes it all feel more urgent.
Apart from the similarity of your body being physically shoved through a large donut shaped machine, a CT scan is a different procedure and it is not used to diagnose MS.
I have had two. It stings while they give you a shot to numb the area, then it's okay. I remember during the second one I felt a little bit of pain radiating down a leg. I said, "My right leg hurts. Is that normal?" I was assured that happens sometimes and not to worry. I gather they will "tickling" that nerve. I was told for both to keep my back perfectly straight for several days to avoid the headache that can happen. It worked for me!
Thank you! I’m hoping it doesn’t come to a lumbar puncture but also mentally preparing for it. I’ve dealt with a lot pain in my life, so what’s a stick? Lol
Lumbar puncture didn't hurt but I have heard some do hurt. Even though I didn't have a lot of lesions, they wanted to do the Lumbar puncture because I was having all of the MS symptoms. They kept telling me it was probably a vitamin deficiency. I'm deficient in B12 and D3. Sometimes you have to be your own advocate.
I will be keeping you in prayer. Hopefully you will find out soon. I was able to find out 1mth after having symptoms with a Lumbar Puncture and MRI’s. Also my doctor order a battery of labs immediately to rule out other things. I’m grateful my doctor listen when I have concerns and try to be active immediately when I experience new symptoms. I pray you get someone to listen and be active immediately to avoid future issues🙏🏾
Thank you! I keep switching between thinking it’s probably nothing and then being like ‘but is normal for there to be swelling on an optic nerve?’ Lol.
I’m not the type to go to the doctor and I’m not great about advocating for myself either. I’m like, well, I’m breathing so it’s all good 🫣
You’re welcome. Often when we Advocate for ourselves things make a difference and a great mutual relationship with your care team. This isn’t a disease we lay down on. Daily we have to fight for the Ultimate healthcare. Many prayers to you with connecting with a great care team🙏🏾
I’m really bad about going to the doctor but the eye stuff…like…I need to know where I stand with my vision. I have a toddler, and my vision is imperative to care for her. So that has definitely pushed me to advocate for myself
I had my back checked probably 15 years ago due to back pain, I don’t remember if it was a CT or MRI but I do recall that they needed a secondary test (which was never done) to check soft tissues as what they did only looked at bony structure. I was pretty much blown off because I was young. I do have a 6th lumbar vertebrae.
About 6 years ago I was having bad bad back pain (I was crying) and my husband gave me a back rub. He found a lump in the lumbar area of my spine and was massaging around it and it burst. I had a sensation of fluid gushing and relief, it was basically a tingling sensation that traveled down my spine. So I definitely have had a cyst on my spine.
Wow! That sounds really painful if your scan lasted only about 10 minutes it was probably a CT. They are more for Bony issues. MRI is better for soft tissue generally speaking.
Yeah, I’ve dealt with the back pain my entire life (started around age 17). I wrote it off as probably due to the 6th lumbar vertebrae and assumed there was probably slipping of a vertbra causing the pain.
I think I probably only had a CT. And my most recent CT showed nothing.
Side note: If I end up needing a spinal tap, do they go in between 4-5? If so, I imagine I might need to make sure that it’s known that I have a 6th for placement
I don’t know if there are any pain management specialists near you but I had crazy symptoms in my left leg that were ongoing.. very little low back pain but I ended up having bulging and extruding discs in my L3 and L4 .. I went through all kinds of PT they thought that my problem was in my leg not my back. MRI showed the bulges and once my doctor did the epidural injections it was a complete game changer! The pain in my leg was immediately gone! I remember having pain in my back since I was a teen as well. My mother always attributed it to the fact that I used to do a lot of backbends 😆
I haven’t looked into pain specialists, I usually just crack my back and the pops can be heard clear from 50 feet away 🫣 but the popping usually relieves the pain. Pretty much nothing else helps other than massage.
I do have to say though, I had an epidural for my daughter’s birth and I have never felt so good. I told my husband that I had never felt so great in my life, lol.
I totally get what you’re saying! The first time I had one to help control the pain in my leg and the knee which was all referred pain from the bulging/extruding discs.. I had almost completely no pain whatsoever and actually I wasn’t having any of the weakness that I’ve been previously having that leg as well.. sometimes I could be like going down the stairs and it would be like I wouldn’t even have a left leg anymore.. it was missing in action.. next thing I know I was on the floor! That was inconvenient!! The epidural injections help me for well over 5 months.. I got them done again beginning of April.. and I’m still going strong with no crazy pains. It has been truly life altering!
Greetings Tótmama. A Lot of the auto immune diseases have similar symptoms. At the surface from what you described might be MS. The things you mentioned sounds similar to my journey with the optic neuritis and the clumsiness. The one thing to do is not worry and stay diligent in your search. The good thing is that there are better treatments for all of it. Hope this helps.
Thank you! The swollen optical nerve has me freaked out. I just want to know if I will slowly lose sight in that eye. I’m not even upset about that, just more so the preparation thing, ya know?
Greetings Tótmama. If you haven't lost sight when it returned to not being swollen you probably won't lose sight because of that. If you did lose some sight in that eye you've lost what you're going to lose. An opthalmologist will give you a better answer. Hoping for the best for you.
The gritty feeling sounds like pink eye. Don't rub it. It will get worse. If its starting to turn red and itches like crazy definitely pink eye. They'll give you eye drops to help. Don't rub the eye and wash hands often. Pink eye is contagious.
Totmama, Hello, and you shared so much important information about your journey and your symptoms. It’s imperative to know that you are making the most important decisions about your health care and we can only share our own experiences. If there is one suggestion, that or might I may politely ask; please see a Neurologist and present all of the symptoms and concerns of previous doctors along with tests (I.e. labs films etc). Unfortunately, there are several Autoimmune Diseases that have similar symptoms; but a skilled Neurologist will know what’s best and where to begin with you! Please keep us updated, praying for you. Sorry for your fall with your previous toddler; Angels continue to surround you. Stay encouraged my friend 🙏💐. NeeC
Thank you! I’m trying to stay positive and also slowing down to prevent more tumbles, etc. I got soooo much sleep this weekend but I still feel drained and sluggish.
I have my Neuro Ophthalmology appointment the end of this month and so I’m hoping that will provide some answers.
PLEASE SEE OPTICAL/ NEUROLOGICAL SPECIALISTS. PUT YOUR SYMPTOMS DOWN DAILY AND TRY NOT TO PANIC. YOU WILL GET THE CARE BY NOT JUST TRUSTING ANY DOCTOR. KEEP US POSTED.TAKE CARE.
My 1st thought, with your eyes having pain and feeling like you're having an allergic reaction, is that you've got hyperthyroidism. My mum had that, which then became Graves Disease. She had to get a parathyroidectomy, and now takes thyroxine to help her feel "normal."With doctors suspecting that it's something to do with your nerves, I'd ask the eye neurologist if it could be something like MS, and if they could got you in for an MRI.
I completely understand you with the doctors being all-so secretive about stuff 🫂 I had to go to an A&E because my GP wouldn't refer me to a neurologist. He told me I was just having panic attacks. I certainly showed him when, at A&E and being seen by a triage nurse, I had a simple partial seizure (my 1st symptom) as she was doing a pupil reaction test. That managed to get me referred. Thankfully, that neurologist was so open about what he had seen and why he was doing certain tests.
Thank you! I do have subclinical hypothyroidism, which is the opposite of hyperthyroidism, this is why the doctors mentioned it (including Graves and Thyroid Eye Disease) but they think it is less likely/doesn’t make sense. It would make more sense if I was hyperthyroid, but I’m not. My TSH levels are also not high, 2.75 (which isn’t perfect, but it’s also not super crazy high either).
Luckily, my physician is going to try again to get me seen by an endocrinologist and then I also have a neuro ophthalmologist appointment as well.
You are not alone. Neurologist that specializes in MS is what you need. MRI needs to be done...the sooner the better. You need medication asap if it's positive for MS. If you could get referred by your pcp to go Cleveland Clinic Lou Ruvo Center for Brain Health-- Best Doctors for MS, ALS, ALZHEIMER DEMENTIA, PARKINSON. Great eye doctor OD. I n Las Vegas Nevada is the location,they guide you and even have a library for patients and caregivers. Try to stay calm and positive, better for your symptoms and the baby. A dear friend of got diagnosed with MS after she had her baby. Praying for you always and please come back anytime soon. I am not a doctor, just feel strongly as a Multiple Sclerosis Warrior
Thank you!😊 Unfortunately, I’m at a new job, so I can’t take off for other states for medical right now. I do have an appointment at the end of this month with a neuro ophthalmologist (the only one in a good chunk of our state). If he has any concern, I bet he’ll be sending me for an MRI. I don’t live in a medical desert, we have two hospitals in our town, but I don’t live in a city either. I do live 2 hours away from a major city though, so if need be, I should be able to access a larger medical facility.
Totmama has any provider you’ve seen for your eye suggested or prescribed steroids?
My experience-keeping to the eye-vision was acting odd. Spent day @ optometrist (pt for 17 yrs) because she fit me in between patients. Based on her assessment she referred me to an ophthalmologist who claimed it was nothing but ordered a brain MRI anyway & bloodwork. MRI showed inflammation of the optic nerve among other things. My PCP called me to schedule 3 days of steroid infusions NOW. The ophthalmologist was on vacation so…thank goodness I ask EVERYTHING be also sent to my PCP. She also made an urgent referral for neurologist.
I hear your vision fears. After things settled a bit Neuro shared I had lost 70% of vision in my left eye!! NEVER would have guessed it was that bad!
So thankful my PCP acted swiftly even in the case that she was getting all of this based solely on my insistence results be sent to her. She didn’t know what was going on because I couldn’t get an appointment with her in the 4 months I’d been trying-she was not happy.
There is more to the story as there usually is.
However, after the steroid treatment and then starting a DMT once diagnosed with MS, my vision became better than it ever was. The script in my affected left eye became better than my right. Not only was I shocked, my providers were too.
Now 7 yrs later I had my follow up visual field test (done every couple of years now) and I am thrilled to report the result was 100%! Looking back on prior results then thru now I was dumbfounded.
Hopefully sharing my “success” story in terms of my optic neuritis journey will give you some comfort .
Early treatment and advocating for yourself are key.
I am fortunate I have a history & good relationships with my doctors . I had to work to get there though which meant knowing when a relationship didn’t sit right & moving on.
Wishing you good navigation in your journey.
Remember that no one is more invested in your wellbeing than you.
That’s awesome that you have improved! And it sounds like once you got medical care, it was good care.
I have not been given steroids or anything, I think at this stage the swollen optic nerve is such an unknown that they’re holding off. My blood work was actually good, nothing interesting. I was expecting signs of inflammation in the blood work but no signs in the CBC
Not sure if these symptoms mean anything… I’ve always had what I have described as arthritis and it’s always worse in my back, and hips.
Well, today my left leg went from totally fine this morning to now it feels like it’s on fire, and it hurts. The knee and hip feel swollen. It feels stiff and I’m limping. Just took two Ibuprofen because it’s the only anti-inflammatory I have on me right now 😫
And it’s just the left side. My right leg is totally fine (I’m right handed).
Yes. That is a very common feature of ms. My entire right side struggles neck to feet. When my left does act up it’s because it’s overcompensating for the right! Ugh 😩
My hip flexors knee flexors and dorsi flexor(ankle) are chronically tight along with joint pain. I honestly don’t remember them not bothering me since early teens, Sounds like you may be dealing with spacicity which is like kryptonite, for me anyway. Extremely common in ms but can also be caused by something else.
As for inflammation markers, mine were not notable @ diagnosis either. This shocked both my pcp & neurologist This is why they need to evaluate so many different things. We are all unique and sometimes a test doesn’t match the whole picture. The best way to go is a MRI to see what is or isn’t there. Unfortunately MRIs weren’t often ordered 35 years ago when I initially experienced what I now know were early symptoms.
Good luck with your upcoming appointment. Hopefully it will give you more clarity as to what is going on and lead you to your next appropriate steps. 🧡
It was rough, it felt like my entire left side was tensing and the left leg felt like it was hot. I tried to cross my left leg over my right knee and couldn’t lift my left leg up and without realizing it I grabbed my left leg with my hands and manually put it over my right knee….then I realized what I’d just done 😞
Lifting my own leg with my hands to cross my legs is not normal for me.
Lasted like 3 hours, it’s mostly eased up with Ibuprofen.
If it happens again, you may want to contact your primary dr ( if you have one) or go to ER/urgent care. Combined with the optic neuritis, you really don’t want to wait. If it is MS, the earlier you know & can treat, the better the outcome.
I waited too long once my symptoms got too big to ignore/make due because I was scared. My bad! Not the choice I should’ve made because more lesions developed in that timeframe.
And if it isn’t, then you can find out what it is.
The more you know, the better decisions you can make.
Update: Today is THE day for my appointment and, to make things more terrifying, I was laid off last week so I have insurance for another 9 days. I literally am going to tell the doctor that any testing he wants will have to be completed in these next 9 days. So, while waiting for my appointment today, I will also be applying for unemployment and selling some things to make sure I can pay for my daughter’s ballet.
Gotta give myself credit though, I updated my resume and have been applying for jobs. I have also been exercising and walking 6 miles a day, my back hurts but I’m pushing through it. I’m sure the doctor is going to ask me if I exercise and there will be some weight discrimination- which is infuriating because doctors listened better when I was a size 3, it’s such bull. Just hoping he can give me quick answers.
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MRI didn't show active disease
Ms or not 
My journey to MS diagnosis
WHY I HATE THE MEDICAL PROFESSION
Trying to find a good neurologist in Boston
