Waiting for a diagnosis... question about symptoms

[Zoe5710]

Hello! I've been having some very bothersome neurological symptoms for the past couple of months and it's been suggested that they could be caused by a variety of things including MS or other autoimmune diseases, migraines, seizures, or an anxiety disorder. I am frustrated, waiting for an MRI, and I'm just really curious to hear whether any of you have had episodes like mine. I'd also just love to hear opinions on whether this all sounds like MS or not. I cross-posted in the anxiety disorder section since I recently was told by an ER doctor that that's what it sounded like to him.

I'm 29 years old and have always been in good health, don't smoke, don't take any medications other than a multivitamin, and don't have a history of any form of mental illness. I'm currently staying home with my 3 young children. About a year ago I started noticing a patch of tingling on the left side of my back. It would come and go and didn't have any apparent cause, but it didn't really bother me and I never got it checked out by a doctor. I've also had a mild tremor in my hands for years, which also comes and goes. Then in the spring when I was 7 months pregnant with my daughter I had the sudden onset on some weird symptoms: confusion, trouble retrieving words, then tingling in one arm and one side of my face, weakness all over, and as the symptoms went away I felt absolutely exhausted and couldn't stop yawning. The duration was about 3-4 hours and I felt perfectly normal the next day. I went to my family doctor who did blood work and an MRI (of the brain without contrast) which came back normal. She decided it was a silent migraine (i.e. the aura phase and no headache).

I felt well until the fall (my daughter was about 2 months old) when I started to have spells of vertigo. I'd get this intense dizziness sometimes out of the blue, and I'd also have some pain behind my eyes and dizziness when I moved my eyes back and forth. It would last just a few seconds or minutes at a time. I also started to get heart palpitations when I would feel a strong and irregular heartbeat for a few seconds and an intense desire to cough. When I coughed, everything felt normal again. It mostly happened while walking briskly or climbing stairs. Then I got a one-sided headache with tingling on that side of my face (the cheekbone) and eye pain. It came and went for a week and I finally saw my doctor who said it sounded like migraine and prescribed a triptan drug. I took it and the headache went away.

Then a couple weeks later I got very stiff, sore joints in my hands and burning pain in the backs of my hands. After a couple days of that I had this bizarre acute episode where my right thumb went numb, then my whole hand, and then the whole arm. After that I got tingling in both legs and started feeling very cold and shaky and having trouble thinking clearly. I also got nauseous, had diarrhea, and kept needing to pee (sorry if TMI!) I took Sumatriptan, thinking that this might be the aura phase of a migraine, but it didn't help. My husband took me to the ER, but within about 4 hours the symptoms were gone and I felt fine, though extremely tired. The doctor at the ER was puzzled, but my blood work was normal so he referred me to a neurologist and said that he thought that MS was a possibility. EVERY DAY since then I've had transient symptoms. None of them are constant, but they come and go and last a few seconds, minutes, or hours. Sometimes it's a sudden bout of nausea, a tremor in my hands or in my head/neck, twitching muscles in my cheek or in my legs, tingling on the left side of my face with eye pain and tooth pain and pressure in my cheekbone, sometimes I just can't think clearly, or I'm so tired I can barely move. I also periodically smell a strong odour of cigarette smoke in my nostrils when no one is smoking. The most significant issue recently has been with my legs. They get weak and feel very heavy, the feet get numb (as if I had frostbite) or I get tingling, burning, or wet sensations. Sometimes it's bad enough that I limp. Most of the time it's symmetrical, but occasionally it affects one leg more than the other. This has been going on for more than 2 months now. My family doctor ran blood work and found nothing unusual, including normal thyroid and B12.

I saw the neurologist for the first time last week. Because of the way the numbness spread from my thumb to hand to arm to legs, he thought that sounded like a migraine and suggested that this might be a rare form of chronic migraine even though I rarely get a headache with other symptoms. He thought a seizure disorder was also a possibility. After that, he thought some sort of autoimmune disease was an option. The only abnormal thing about his examination of me was that he noted polyneuropathy (dysfunction of multiple nerves) in my legs/feet. I didn't sense vibrations at a high frequency (though I could feel it perfectly well in my hands) and couldn't discriminate between hot and cold sensations. There was a threshold midway up my calf where I could suddenly feel the cold again. He's running more blood tests because he said that my family dr hadn't thought to check for a bunch of rare things that were possibilities, and I had an EEG, and I have an MRI scheduled for next week (brain and spine with contrast). Apparently migraines would not explain the polyneuropathy in my legs though.

So I had another real "episode" yesterday where a bunch of symptoms came on at once including intense tingling in my legs, diarrhea, tightness in my chest, weakness in one arm, and then finally I couldn't feel my legs at all or even sense where they were, though I could still move them. It was also preceded by a couple days of sore joints and burning pain in my hands. My husband took me to the ER again and the doctor said it sounded like a classic anxiety disorder, especially because it involved heart palpitations and tingling. When we asked about the possibility that it was migraines or an autoimmune disease, he kind of shrugged and made it sound like I'd been pushing the neurologist to diagnose me with one of those. Then he said that even if it was MS or lupus or something, they were chronic and there wasn't that much that could be done and it certainly wasn't an emergency. Plus, he said that MS didn't come and go the way I described. Predictably, my symptoms had resolved within 3-4 hours so I couldn't even really show the doctor what was going on. I had a bad headache last night and today feel fine other than tingling in my feet on and off.

So I'm waiting on that MRI and will see the neuro again at the end of February for results. Thank you for reading my LONG post! I'd love to hear feedback. I wish you all luck and good health!

Zoe

[allmymarbles]

The problem with modern medical practice is that most doctors specialize and have tunnel vision. You need someone who can look at the whole picture. With hard to diagnose ailments your best bet may be a physician who specializes in alternative medicine. My doctor is such a one and I count myself lucky.

[Redilma]

The problem with neurological (or in fact, most general) conditions is there is no such thing as typical. It's very difficult to guess what could be wrong with you judging by what you have written, unfortunately it could be a long process and in the end, regardless of what is actually up, your diagnosis will be determined by clinical evidence mostly and initially different doctors will tell you different things and set your brain into crazy thinking mode. I am still undiagnosed and have been told that MS, CFS, anxiety, migraines, epilepsy are all possible by separate doctors. Not that it matters as my neurologist blamed my breathing technique and said 'hmm it doesnt sound like migraines' (lol). Good luck with your tests and results etc. I've been ill for several years but as my brain MRI came back normal my neuro is refusing to do more tests.

[allmymarbles]

This doesn't sound like anxiety to me. I would see a neurologist.

[COBOB]

Zoe,

MRI contrast only shows the age of a lesion that can be seen in normal T2 and FLAIR sequences.  So if you had no hyperintensities, contrast will not add anything.  Some of your symptoms don't seem like typical MS symptoms.  Diarrhea and joint pain are not typical symptoms.  The other thing that seems a little off is "short duration" symptoms.  My foot/leg pain and spasticity has been going on for months.  Most MS patients (that I know of,)  wish our symptoms only lasted a few hours.

I can see why some of your doctors are thinking anxiety or migraine.  The short duration of the symptoms and rapid resolution kind of fit.  Seeing a neurologist makes sense and getting a new MRI to make sure nothing has developed since that last one.  At this time, the symptoms don't sound like typical MS, but who knows...MS has many atypical presentations.  It also doesn't sound like Lyme's or other more serious MS mimics that come to mind.

I suggest that you out together a time line of your symptoms and stick to the major ones that effect your ability to function.  Too many minor symptoms muddy the water.  You might want to make a list of a few questions you would like to ask the doctor.

Bob