Scared confused.

[Kyhu3]

I am scared to death regarding my current symptoms. I have been to see my PCP, neurologist and hematologist. My symptoms began approximately 2 years ago. I had vision changes, extreme anxiety, heaviness into right leg, right hand, and extreme fatigue.
Tests for my eye (optic nerve) were negative. 2 MRI's were completed with and without contrast - negative. NCV and EMG tests were negative/normal. Blood work showed slightly low vit D and slightly low WBC.

My symptoms have been intermittent over the past two years. Lasting 1-2 weeks at a time.
Over the past week I have had sensation of R foot drop, however my R foot is still very strong.
I wake up in the morning feeling like I have been hit by a truck. Muscle aches and soreness.

Scared to death. I have asked my neurologist directly regarding MS and he says no.
I made my own appointment with ms specialist and will also continue with my neuro.

So very scared an anxiety is taking over my thoughts. I would appreciate all and any help.

[Kyhu3]

anyone out there?

[Karenkay]

Well ... you won't know until you know. How's that for an answer? Lol But really, why max yourself out? If you are already feeling poorly then stressing out about what you can't change will only make you more ill.

I'm hoping you get some closure soon.

[22cyclist]

Kyhu3: I think you can take comfort in the 2 MRIs being normal or negative. In foot drop, the foot is weak, or the upper leg (hip) is weak, that makes the foot weak and foot drop ensues. Foot drop is from a weak foot, not a strong one. This needs to be diagnosed by a neurologist or a physical therapist. They are the only ones who can really diagnose foot drop. A pcp can notice it too, but is not as good at diagnosing it.

What you didn't say is how long of a period between these periods of symptoms do you go without any symptoms at all? Is it days? Weeks? Months?

I am sorry you are feeling bad. Your anxiety may be playing a role in this.

Take care,
Lisa
Moderation Team

[Kyhu3]

To answer your questions...

I am a physical therapist.. my shin hurts from trying to pull my foot up, however i can walk on my heels across the floor.. that is what is strange. Also, between symptoms it can be days, weeks or months.. usually they last for 1-2 weeks and then go away .. usually for at least a period of weeks, some for like 3 months

Negative MRI's were on head only. I have had one on lumbar spine as well. That was negative.

Continued helpful input is very much appreciated.

[22cyclist]

You probably don't have foot drop if you can walk across the room on your heels. That doesn't make much sense. What do you think about it?

The MRI of the brain is usually sufficient for looking for MS initially, but sometimes a cervical and thoracic spine is done if symptoms and physical exam warrant them. A lumbar MRI is not done for MS because the spinal column stops at the end of the thoracic spine. There is no place for MS lesions in the lumbar spine except maybe the very top of the lumbar spine that can be seen on a thoracic film.

You can ask for spinal MRIs if you want to, its not unreasonable. It will depend on your neurologist.

I asked about your time between exacerbations because there has to be at least 30 days in between exacerbations to be considered to be a true exacerbation in MS. So any in the time in between will not count.

Good luck at your next appointment. Let us know how it goes.

Take care
Lisa
Moderation Team

[Kyhu3]

Thanks again for your response. Do you feel these are ms symptoms?

[Kyhu3]

I should also mention I have a history of Lyme Disease, however this sounds more MS to me.

[22cyclist]

Some of the symptoms could be, but I would look into Lyme for sure. With the problems with pain in your muscles. That is more uncommon in MS at the beginning. Since you have no evidence of CNS problems on MRI it is hard to say.

You can ask for a spinal MRI, but like I said, it depends on your examination and your symptoms whether they will entertain this idea.

Good luck

Lisa
Moderation Team

[Kyhu3]

I have the sensation of weakness in hand and foot.. I have never read that in regards to Lyme. Only MS
I sure hope this could a Lyme flare up, but it has been treated in the past.

[Kyhu3]

Any thoughts ?

[onlyairfare]

I think it sounds like a good idea to see a second neurologist, and if you are really worried about MS when your first neurologist thinks it is not MS, then seeing an MS specialist makes sense to me.

If it is MS, you'll be in the right hands. If this MS specialist says it is not MS, I suspect you will have more confidence in that opinion, coming from a specialist in MS.

Problems other than MS can cause foot drop - in particular a "pinched nerve" or "herniated disc" in the lower spine. L4, L5 and S1 nerve roots are all involved in controlling the foot and ankle. Or it could be a muscle injury. It sounds as though you have had a lot of appropriate tests, but maybe one or more should be repeated.

Discussing all this with your neurologist (the new one, since it sounds like you aren't convinced by your regular neuro) is the way to go. You need a physician who will listen to your history, do a physical exam, then order any indicated tests.

I have right foot drop (actually the whole leg is weak, but it is the foot drop that is bothersome), and I did get an LS spine MRI way back at the start of all the testing. That MRI was normal, and I don't have any relevant "pinched nerve" or disc problems. Who knows? I do have MS.

Good luck with your ongoing evaluation.

[Kyhu3]

Thanks for the response. I don't actually have drop foot however my food feels weak with a sensation of difficulty lifting my toes. With resistants I can withstand all pressure. But when I walk I get this pulling sensation in my shin that makes my foot and leg feel weak. I am a physical therapist. I have had others strength test my leg and they all say it is strong.

My first general neuro does not think ms at all. But I am very scared it is. Ugh.

Anyone else out there have sensation like this however are very strong with testing ??

[Kyhu3]

Ok please I am looking for help. My right hand and right arm feel very weird. Almost rigid. I am typing this message with both hands however my right hand feels very very stiff and tight. I am a pt and I am familiar with what spasticity is , however unsure if this is what I am experiencing. I

I have not been diagnosed with anything yet. However I am absolutely freqking out right now as I feel so strange. These symptoms have been ongoing for over a year now but I have never had this. I would love to be able to chat with someone about this. Please please help

[Kyhu3]

anyone out there ?