Frustrated with being in limbo - does this sound like MS?

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Frustrated with being in limbo - does this sound like MS?

Postby zoe5710 » Sun Jan 30, 2011 6:15 pm

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 number of different things such as MS, seizures, migraines, anxiety, etc. I would love to hear your opinions, and also to hear whether this type of progression sounds like something any of you have experienced.

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.

Thanks for making it through this LONG post. I'd love to hear your thoughts.

Good luck to you all!

Zoe
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Re: Frustrated with being in limbo - does this sound like MS

Postby NHE » Sun Jan 30, 2011 9:40 pm

Hi Zoe,

zoe5710 wrote: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.


I'm not sure what to tell you about your symptoms, but I can share with you my first MS symptoms for comparison. In the Fall of 1991 I had numbness in my shoulder that went down to my thumb and forefinger. I was advised by a doctor to try ibuprofen. It didn't help. I tried massage therapy and chiropractic since I thought it might be due to a heavy backpack full of books that I typically carried around with me. Neither helped. I wound up seeing a neurologist who poked at me and charged me ~ $230 for a half hour of his time, but nothing conclusive except that I had numbness. The symptoms finally went away on their own after about 4 or 5 weeks. It wasn't until 8 years later that I experienced my second set of symptoms that led to my diagnosis. These included numbness and burning sensations in my foot that lasted for about 4 weeks and then I developed optic neuritis on top of that. The latter problem led to my getting an MRI, spinal tap, etc. and subsequent MS diagnosis. By the way, the problems with my foot have never gone away.

NHE
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Postby SaintLouis » Mon Jan 31, 2011 3:48 pm

Hi Zoe, sorry to hear all you are going through. In addition to seeing a neuro have you seen a rheum or been tested for rheum. diseases like lupus, vasculitis, sticky blood, etc? You might want to do so if your neuro comes up empty based on the MRI's etc he wants to run. Hang in there...

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Postby bluesky63 » Sat Feb 05, 2011 5:14 pm

This may sound like it's coming from out of the blue, but is there any chance you were bitten by something? A few years ago I was bitten by an insect that caused systemic symptoms (neurologic and digestive) that came and went for many months before resolving properly. I also have MS, but I recognized at the time that the symptoms seemed different than my usual MS symptoms, and a very smart doctor figured it out. One clue was that when I had stomach symptoms I also had a rash (it looked like blisters). I never would have figured it out and in fact did not feel the bite.

After I told this to other people I heard lots of other similar stories. I thought I was unique, but it seems to have happened to plenty of people. Just one more idea. Best wishes. :-)
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Postby unsettled » Fri Feb 11, 2011 12:46 pm

I have a quesion.. I dont know where to post it. So i guess i will post here if that is ok. I recently had an MRI done. My question is, if something had showed up, would my doctor have called me or wait until my appt?. Is that how some of you found out? or did your doc call you.
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For "unsettled"

Postby zoe5710 » Fri Feb 11, 2011 1:01 pm

Hello,

In my limited experience, the doctor will wait until the appointment to discuss findings with you unless something very concerning appears on your blood work or MRI results. Then he or she would call to tell you so you can get a quicker referral to a specialist, start a medication, or whatever is necessary. But abnormalities that aren't an emergency probably would just be talked about at the next appointment.

Hope that helps.

Zoe
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Postby unsettled » Fri Feb 11, 2011 1:07 pm

Thanks Zoe,

I have just ben having some weird symptoms. Went to a neurologist, she did her exam, said i had jumpy reflexes. She sent me for an mri. So i was just wondering would she have called me with the results if showed anything. If you dont mind me asking, do you have ms and how were you diagnosed?
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To bluesky63

Postby zoe5710 » Fri Feb 11, 2011 1:07 pm

bluesky63 wrote:This may sound like it's coming from out of the blue, but is there any chance you were bitten by something? A few years ago I was bitten by an insect that caused systemic symptoms (neurologic and digestive) that came and went for many months before resolving properly. I also have MS, but I recognized at the time that the symptoms seemed different than my usual MS symptoms, and a very smart doctor figured it out.


Thanks for your reply! That's an intriguing idea. I'm still waiting for my follow-up with the neurologist to hear that results of the bloodwork, EEG, and MRI so I have no idea what it will all show. I don't recall being bitten by anything, but I guess it's a possibility. What type of insects can cause neurological symptoms? I know about ticks and Lyme Disease, and I was actually bitten by a tick but it was nearly 10 years ago. I've heard people say that symptoms can emerge years later if you have chronic Lyme Disease, but I'm a bit skeptical. My symptoms really got bad in late November and I live in Canada so it was already too cold for most insects to be around...

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Reply to unsettled

Postby zoe5710 » Fri Feb 11, 2011 1:20 pm

Hi,

I don't have a diagnosis yet, but I know all about weird symptoms! I've seen a neurologist and he ordered an EEG (to see if I was having seizures), bloodwork (all the basics plus testing for autoimmune diseases like lupus and rheumatoid arthritis and also Lyme Disease) and a brain and spine MRI. I had an MRI lat year following an episode of tingling and cognitive symptoms that lasted a few hours then resolved. That MRI was normal. Now I've been having symptoms continuously for 2.5 months and no one knows what's happening except that it's neurological. The only obvious abnormality in my neuro exam was polyneuropathy in my legs (I can't sense vibration or feel temperature changes). :cry:

I've heard others say that they were diagnosed with MS based on symptoms and their MRI. Some also have a lumbar puncture. There's a certain pattern of symptom onset that is typical of MS though there's also a lot of variety from person to person.

Good luck!

Zoe
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