Hi there. My name’s Vi. I’m an American. Just wanted to talk to anyone that might listen. I’ve had a long strange journey, but I feel as though I’m getting closer. I started out with numbness in a small patch on one leg. I was x-rayed for pinched nerves and lumbar problems, nothing found. The numbness went away. That was about 4 years ago. After that, started some terrible vertigo. I would wake up some days, the room spinning, an urgent need to throw up and nothing would stop it. Urgent care doctors thought it was labyrinthitis despite it lasting years. Fortunately someone also documented the only doctor witnessed account of my elusive nystagmus. During this time, I had some more numbness and tingling in the opposite leg and foot. This is when they first suspected ms. They first ran blood work to rule out diabetes as I have a lengthy family history of autoimmune complications, and my seemingly healthy brother was diagnosed diabetic at the ripe age of twenty. No diabetes. I was then scheduled for my first mri. This came back clean. I was sent to an ENT who had never heard of anyone with such bad vertigo for an entire day that wasn’t caused by infection. They ran tests that came back normal. The vertigo settled down, so then we just waited. About a year ago, the pain started. First in one shoulder then it left and went to the other. They did some x rays where they found some bone spurs and calcium deposits, due to my love of milk, no less. They ran more bloodwork that came back fine except for an elevated ANA. I was referred to a rheumatologist at this point. The rheumatologist suspected lupus from the fatigue and pain and I can’t remember what else. All of this blood work came back normal and basically ruled out lupus and the rheumy dropped me. From there I saw an orthopedist who claimed it was arthritis, swore up and down it had to be lupus, and prescribed me anti inflammatories, which really didn’t do much more for me. He had me do more blood tests every 3 months but his philosophy was “we’ll just wait for your ANA to level out on its own”. Which frustrated me, because it should be more important to find the cause of arthritis in an otherwise healthy 23 year old. My ANA magically went away, and has been gone since. This is where I took matters into my own hands. I researched and found that lupus mimics ms, so I scheduled another visit with my neurologist. They ordered another mri. This came back with one 3mm lesion on t2. They told me it could be something or it might be nothing and gave me more anti inflammatory for a hand ache and cramp that caused my fingers to curl up and made me drop things. At the time I worked in a sterile department of a hospital, so this was causing me problems at work. After this, I had an ER visit in which my chest hurt so much I could hardly stand. After taking more anti inflammatory painkillers other than my usual daily dose and waiting an hour, it still hadn’t let up and I gave in. The ER thought it was a clot, ruled that out with CT scan, then diagnosed pleurisy, despite no diagnostic or clinical evidence except location of pain. I was a little upset. My leg muscles had been cramping badly and my memory started slipping, which is not like me at all. I saw the Neuro again who thought it was just a calcium deficiency and basically dismissed me just like that. Over 6 months later, the cramping is a dull constant throb, the tingling went and came back worse, and I started getting this awful exhaustion in the evenings where my brain would just shut down. My new Neuro ordered blood tests, which came back normal (plenty of calcium, imagine that!). It ruled out Lyme disease, thyroid problems, pituitary problems, vitamin b and d deficiency, calcium deficiency, potassium deficiency, infection, vasculitis, inflammation, and basically everything that it could be besides a neurological disorder. He’s also ordered a third mri which will be done Friday. I patiently await a diagnosis. I’m also scared, because if it isn’t ms, that doesn’t leave behind many survivable options, based on other symptoms that I haven’t fully discussed. I would appreciate even some verbal support. My boyfriend, who I live with, is not very understanding. I work a full time job averaging 45 hours a week, as well as take classes online, clean the house, do dishes, do laundry, take care of our 4 pets single handedly… I won’t say it’s the hardest situation but it’s not the easiest either. We are supposed to get engaged soon, but his parents think my medical bills will weigh him down, which sounds really cold and rude to me… I just feel like I’m going crazy some days. I hate to even talk about it because I feel like most people don’t believe me. Some will say “it’s probably just stress”. I’ve actually switched jobs to a desk position because it got too painful. I make more money now and I don’t have to drive so far to work, so if anything I would be less stressed. Yet, people still think they know more than doctors. Anyhow, that’s my story! I try to stay positive anyway, I just would like a diagnosis so I don’t feel so nuts!
Hi Viola, i am in a similar situation to you. Had so many tests done over the 14yrs years and nothing much ever comes back positive. I had another mri last year which showed 3 lesions so had a lumbar puncture and evoke potential tests which were negative so neuro said to see me in 12 months and didn’t give a diagnosis. I have been made to feel like i was an hypochondriac over the years because the tests all came back normal. Been told i was anxious, depressed, i had health anxiety etc etc.
Thank you for posting! I’m sorry to hear you’re in a similar situation, but it’s nice to know I’m not alone. I’ve been having a lot of trouble so far today. Brain fog, pain on my right side of my forehead, numb right knee, tingling in my right foot. It makes it hard to do my job, feels like my brain just freezes and won’t work. I feel like I’m complaining again! Ha… well anyhow. I hope you get the answers you’re looking for, too. I’ve heard so many people in forums talk about how they have to fight to get tests done and doctors will call them crazy. I’ve been fortunate so far and haven’t had to deal with that. But it certainly worries me that I might in the future. I wish there was some easier way to figure out what’s going on. They say medicine has advanced so much, but when it comes to ms diagnosis, it feels like we’re still kind of in the dark. Here’s to keeping your chin up! I’m here to talk and share experiences if you’re ever feeling lonely. I know I have so many people around me, but I still feel alone. No one can quite relate unless they’ve experienced it, yet I wouldn’t wish this on anyone. My boyfriend hates the mantra “it could be worse”, he says it could always be worse, but that doesn’t mean it’s good! But he’s never been in a situation where “it could be worse” is the only thing keeping you going. So when all else fails, remember that it could certainly be worse, and we’re still fortunate.
How are you now? Have you had a diagnosis? are you any better? I am in the same situation, I have paid private to see a neuro and had MRI and I am waiting for the results. I have the same symptoms as you and I am going out of my mind with worry.
Hi NKristy! Well the update is I have a diagnosis, but I don’t think it’s the right one! My MRI showed two small lesions. My Neuro says that because there was very little change, it’s probably not MS. He hesitated and said he’s going with Fibromyalgia tentatively. But he didn’t change my medicine at all. He told me we’d follow up in six months to see how it’s going then. Since my last appointment, I’ve had worsening leg pain and weakness. Cramps make it tough to bend my legs. It started as mainly the left side, but now it’s both. It’s scaring me a bit. I’m having trouble sleeping again. I’ll wake up and my foot is pointed so hard it hurts a little. Or my knee won’t bend. My mouth gets a all tingly some days when I eat. My tongue and roof and cheeks, the whole deal. And I’m having more and more muscle twitches. I get twitches near my heart, now. I’m not sure if they’re palpitations or what’s going on. Its like a deep thump, and I feel out of breath for a second. But my hearts been looked at several times in the past with nothing wrong. My knees get stiff out of a hot shower and my thighs will burn while doing absolutely nothing. I’m getting worried and I don’t know if I can wait another four months. I’ve read a bit about progressive ms, but I know I’m a little young for the average onset. There are always exceptions, but my fiance thinks I’m crazy. My life insurance company wouldn’t give me waiver of premium if disabled or guaranteed insurability based on my medical records, it makes me think maybe they suspect something else too. Fibromyalgia is not known to be progressive or technically disabling. I feel like giving up, but then again I’d like to push on and find an answer. I’m just scared of being called psychotic by a medical provider, as I know some people are before they get a diagnosis. I feel like fibro is a catch-all and so easy to misdiagnose. I’ve never had a spinal tap or evoked potentials done, I wish they’d try just a little harder for my sanitys sake. I hope your battle is going better! Have you been seeing a Neuro? What kind of tests and responses have you had? I hate to see someone else going through this also, but it’s nice to have company.
pleased you have at least some answers. I am seeing my neuro tomorrow for the results of my MRI, so I will have to see what he says. Its the worry that we have to go through until we find out that makes us worse, so now you have another few months to wait. I hope that your symptoms ease and that you start to feel a little better soon. My numbness in my right arm has came back with a vengeance tonight after being relieved of it for the last few days. I have had brain and spine MRI but only getting results of brain scan back tomorrow, they said I wouldn’t get the other one back for a couple of weeks. I will keep you posted and I hope you feel better soon xxx