So, I just got back from the neurologist, pretty frustrated.

I'm 21 years old, I've been dealing with multiple symptoms over the years, and have been told time and time again, they don't know what's wrong with me. I was told I possibly had lymes disease, test came back negative, told I had lupus for a period of time but the test was negative.

I've tested positive for ANA everytime they tested me, except for the last time they tested it was negative. My rheumatologist seemed interested in my case for a while, then lost it when tests kept coming back negative, didn't even bother saying he thought I had lupus, he said nothing about my test results, we had to ask the nurse about it and he came in and said he thought it was lupus. Ended up seeing another dr and he checked the test and said they were negative.

Well, needless to say I've been to quite a few doctors, been told I was perfectly healthy by one, others just seemed rather dismissive, until the new-er symptoms I've been having. My PD sent me to Neuro after doing a MRI scan, which came back normal, it was without contrast.

My symptoms are,

Muscle weakness, heaviness in limbs mostly legs, balance issues, memory problems, forgetfulness, can't remember the right words and saying the wrong words, fatigue, and I've started having trouble with my swallowing more recently, muscle stiffness, having to urinate a lot more frequently and the list goes on.

The neurologist I saw was pretty cold, she was straight to the point for everything, seemed rushed, she didn't have a good bedside manner I guess you could say, and asked me really specific questions which honestly I think you'd have to have perfect memory to be able to know the answers to

I've been dealing with this for years, and at the end she said she doesn't really see anything neurological going on, and she doesn't know what's wrong with me. She's sending me to a neuro-psychologist for my memory problems, urologist for the urinary problems and I'm getting a swallowing test. I'm going to do them, but I'm just alittle discouraged because I thought for sure she'd be able to find something.

Is this normal behavior for neurologists, or specialists or do I just have bad luck?

Oh and I've seen the babinski test done before, and she did it on one foot while they were hanging off the table and she started at the middle of my foot which I thought she was suppose to start at the heel? Maybe I'm wrong, she did the rhomerg test which I know i failed because I fell back and couldn't keep my balance, along with the walking heel to toe, kept falling to the side and losing my balance.

I guess I'm just wondering if others have had similar experiences, does it sound like she did everything right, because it honestly seemed like a sloppy job to me, but I don't know. I'm sorry if this was a lot to read, I'm just frustrated and I wanna know if I'm just overreacting...Thank you for taking the time to read.

First of all, welcome--you should have others responding that have been here much longer than I have. I am sorry to hear you are having so much trouble at such a young age.

I can relate to having positive auto-immune bloodwork, then it turning negative. I had a positive ANA, C-reactive protein and anti-phospholipid antibody test when I was 35. Definitely had symptoms, mostly of peripheral neuropathy in face, tongue, hands, feet and up the left shin. My eyes were slightly drier than normal as well as saliva, I have to have water nearby to eat certain foods. So we were thinking Sjogren's. But I didn't test positive for those antibodies. I was put on Plaquenil anyway, and now at 43 I am taking a break from it because my PN is as strong as ever and I continue to have completely normal bloodwork.

First question--do you have any family history of autoimmune issues? Having once positive labs along with family history should get a good rheumatologist to treat you even if current labs are normal. Treatment can be a rough issue if they can't decide on a working diagnosis, but plaquenil can be a good place to start.

In terms of your neurologist--many specialists can be lacking in bedside manner and patience. Sometimes you have to work with what you have with insurance, but if you have the capability--absolutely doctor-shop until you find someone you feel comfortable with. If you are lucky enough to live near a University/teaching hospital, I would start there in regard to specialists.
And a good primary doctor/internist is key to keeping everything organized and on track.

Good luck and again, welcome!

Elayna, I can't say I have any answers for you, but I definitely have sympathy for you having gone thru the same thing, and continuing to do so. I had/have the majority of your symptoms; I had the positive ANA with the rheumatologist that lost interest after a while and all those things. I ended up at a neuro when I was in my early teens who diagnosed me with partial seizures and as I got older I had some grand mal seizures after having about 6 or 7 over six or so years, and was diagnosed with epilepsy about a week ago bc no one else had any other ideas. I even went to the mayo clinic for a month with no luck. I have extremely hi heart rate and so many other symptoms that don't make sense, definitely nothing epilepsy covers. I wish I had answers for you, but I wanted you to know there are other people out there in the same situation in which they actually want a doctor to tell them something is wrong with them and stop looking at you like you're seeking attention or depression is causing all of your symptoms.

Keep trying and try as hard as it may be not to get too frustrated.
There are more of us out there than you think.
Keep in touch. You'll be in my thoughts

Thank you for the welcome

It's hard to go to what feels like a million different doctors and not really have any clear answers. I'm sorry you're in a similar place, I hope you're able to have some answers soon as well! I don't have that rheumatologist anymore because everytime I went in to see him he would ask why I'm there, like I shouldn't be coming to him for help, so I switched. He actually thought I had Sjogrens for a while, he did the sand-paper test in my eyes, which was very uncomfortable, and said I was negative, think he did the blood test as well.

I have an aunt who has MS, she kept telling me it sounds like I have it too, but the MRI was clear. She also has Fibromyalgia as well as one of my uncles.

I know I'm not making these symptoms up, not sure how that would even be possible, so it's just about finding a Dr who tests for the right thing I suppose. It's hard to feel the way we do and not have a diagnosis ontop of that, people tend to look at you like you are attention-seeking, or just making it up.

I appreciate you responding Jenng, it's nice to know I'm not the only one going through this.

Thank you

It does help quite a bit to know there are others going through this, I've been feeling like the only one lately, even though I know it's not true.

I hate when it seems like they just wanna diagnose you with something so they can just start treating you for what they think you have, I hope that's not the case for you, but it doesn't sound like they're treating all your symptoms, I hope that changes for you soon

The rheumatologist I had even tried telling me positive ANA can happen in healthy people too, but as far as I know it can imply something is wrong in someone who has symptoms along with the positive ANA.

Most doctors will try to tell you you're crazy if they can't find anything wrong with you, which I find kind of arrogant, it implies they know your body better than you and know without a doubt nothing is causing your symptoms cause nothing they're looking for is showing up, which most of the time it's because they are not looking for the right thing.

It's hard but I am trying to keep from getting too frustrated, my mom and my fiance are very supportive which I know is very lucky. Thank you for your post, I hope you find answers soon as well, it's nice to know there's others going through this stuff too

yes this is very frustrating. But pretty normal for a neuro. There may be just nothing they can tell you. Took me such a long time to get a diagnosis....I have an autoimmune disorder. I had similar sorts of problems to you and also clear blood work most of the time and nothing showing up in neuro tests mri etc. My problem was diagnosed by an immunologist in the end.

I think it's important sometimes to realise neuro symptoms can be caused by disorders which are not neurological so nothing will show in the brain. If a neuro sees clear tests then they will probably not know what to do with you.

As my specialist explained it to me recently....I have neuro symptoms so he referred me to a neurologist to rule out any active disease in the brain. The mri's etc did rule that out. But a neuro is not really trained to diagnose the kind of disorder I have. The neuro I saw was one with an interest in autoimmune disorders and she was convinced my problems were being caused by an underlying condition but wasn't really well versed enough to say what.

My specialist believes my symptoms are caused by inflammation. That's not going to show up on mri. Consider going to another sort of doctor. An immunologist may be able to help you more. Without knowing a lot more about your symptoms it would be really difficult to suggest anything else.

It is my understanding that, although harder to diagnose, having negative bloodwork for Sjogren's is not all that uncommon. Especially being as young as you are, sometimes symptoms precede the bloodwork. I agree that finding a new doctor is in order. I have found over the years that it is important to balance your desire for a diagnosis with living life, being pro-active in making healthy choices, and trying to find the positives in each day. I say this because I have about 20 years on you.

Can I ask you what your symptoms are? And what is the difference between an immunologist and a rheumatologist. I've gotten the Neuro BS too and have found myself very frustrated with idiotic answers.

You said that your dr. Said your symptoms were caused by inflammation... Did he/she diagnose you with anything specific and/or any sort of treatment?

sorry, just saw your question. I was diagnosed with Behcet's syndrome some 8 years ago. There are pretty specific symptoms which point to Behcet's and you don't mention any of them. But I would suspect you might have some kind of similar immune system malfunction going on. Someone earlier suggested perhaps Sjogrens and I think something like that is a good guess.

I am diagnosed and treated now with interferon though I have had other treatments....mycophenolate for a long time and some other treatments which were less successful for me. It's so difficult to explain this but when you've been through this process for years as I have, you eventually realise that some doctors just don't have the answers to some problems and we expect them to. A neurologist did nothing for me and a rheumatologist did nothing for me.

Where I have an immune system disorder, my immune system is over active and causes inflammation. So I get pain in my joints but I don't have osteo or rheum arthritis. I have pain and swelling without the damage to the joints. A rheumy won't do anything for me because he's used to dealing with certain types of disorders and that what he's good at and understands.

By the same token I have neuro type symptoms....massive headache, balance problems, electric shock pain and with my headache have almost hallucinatory experiences. More recently I have had a type of seizure associated with the pain. But I have no neurological disease identifiable in my brain.

So my illness was diagnosed by an immunologist who looks at my system in a different way and understands that there are certain symptoms which are caused by inflammation. You can't scan that and see it sadly. Otherwise it would be so much easier for all of us.....patients and doctors. The diagnosis is made on disease history and by ruling out rather than ruling in other types of disorders. The answer to your question what's the difference between a rheumy and an immunologist..... They are different sorts of doctors with different sorts of training in the same way a heart specialist doesn't deal with the brain.

An immunologist is more equipped to deal with overall systemic disease which may not necessarily have a neurological basis but may have some neuro type symptoms. Does that make sense. I hope so!

Also, if you think of it....an immunologist would also treat HIV amongst other diseases. HIV has symptoms which may look on the surface like they are a neurological disorder but it's actually a type of immune system malfunction. Do you see what I mean?

There are so many immune system disorders which we never hear about. They have a lot of similar symptoms but are distinct. You don't know much about them until you are diagnosed with one, then you realise there's a whole host of things that can go wrong with your immune system but you never hear of them. Not sure why, probably because so few people get them. My disease is very rare. Very little publicity or public profile.

sorry, just remembered you asked me what my symptoms were. So many and I don't have all of them all the time. I've had this disorder for many years and gone through different stages.
Symptoms have included sore throats, head pain which lasts for days sometimes weeks, tinnitus, balance problems, neuralgia type pain in different parts of my body. Joint pain. Muscle pain, sometimes in the lower muscles, more recently upper body, back neck and shoulders. Electric shock type pain. Symptoms of peripheral neuropathy, symptoms which look like irritable bowel, tremor particularly in right hand. Loss of sensation in toes, sometimes in leg and in fingers. Chronic fatigue. Nausea. Sure I haven't covered them all. Palpitations. Photophobia, eye pain, sinus pain, acute dryness in my nasal passages. A lot of symptoms. Seizure/fainting type events. Sure I haven't mentioned them all.