Honestly pretty terrified in Dallas

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Honestly pretty terrified in Dallas

Postby Wewoodson » Fri Jun 03, 2016 5:28 pm

I'm a 44 year old male in good health. I exercise regularly. My mother has has MS for 33 years.

For the past several months I've felt I've had issues with my gait when running. I noticed it quite a bit last Thursday. I happen to have recently read about an injured football player with drop foot, and googled it. After that I tried to raise my right foot. Nope. Heel walk? Nope. Ok, I thought, looks like I have drop foot. What causes that. More googling. Oh, it closely associated with MS (and I don't have any known injury which could have damaged a nerve otherwise). TERROR. I honestly realize that it's irrational, after all I may not have MS, my mom has had it for a long time, and while it certainly has made her life a lot more difficult, it's not a death sentence. But I can't help it. I called an MS specialist, but they wouldn't see me without a rough diagnosis. So I had to wait a week to see my family doc.

In the interim I swear I have crampy pain in my right palm and some itching and prickling there as well. But I don't trust myself. I honestly wonder if I'm so closely monitoring every random feeling that I'm blowing normal daily sensations into symptoms.

Yesterday I saw my dock. Confirmed weakness in foot. Gave me a referral to a neurologist. Said it's probably not MS, particularly since I'm male. If the hand sensations are real could be carpal tunnel.

Now I have an appointment with a neuro in 3 weeks (God the waiting is killing me). And for most of today I've had a weird headache. Not really a headache but rather a weird tightness that runs from the back of my scalp down to my neck. So off my imagination goes again.

I think I'm going to need Xanax to survive the coming weeks.

I guess I just wanted to see if this sounds like a normal presentation of MS or not?

I also wonder if it's ok to exercise. I haven't for the last week, since it seems running worsened the drop foot (and now I also recall that lifting legs really affected it, as I fell down the day before running after leg presses, and now I know why). Anybody have any thoughts on that?

Thanks.
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Re: Honestly pretty terrified in Dallas

Postby NHE » Sat Jun 04, 2016 1:28 am

Welcome to ThisIsMS.

Wewoodson wrote:I'm a 44 year old male in good health. I exercise regularly. My mother has has MS for 33 years.

For the past several months I've felt I've had issues with my gait when running. I noticed it quite a bit last Thursday. I happen to have recently read about an injured football player with drop foot, and googled it. After that I tried to raise my right foot. Nope. Heel walk? Nope. Ok, I thought, looks like I have drop foot. What causes that. More googling. Oh, it closely associated with MS (and I don't have any known injury which could have damaged a nerve otherwise). TERROR. I honestly realize that it's irrational, after all I may not have MS, my mom has had it for a long time, and while it certainly has made her life a lot more difficult, it's not a death sentence. But I can't help it. I called an MS specialist, but they wouldn't see me without a rough diagnosis. So I had to wait a week to see my family doc.

In the interim I swear I have crampy pain in my right palm and some itching and prickling there as well. But I don't trust myself. I honestly wonder if I'm so closely monitoring every random feeling that I'm blowing normal daily sensations into symptoms.

Yesterday I saw my dock. Confirmed weakness in foot. Gave me a referral to a neurologist. Said it's probably not MS, particularly since I'm male. If the hand sensations are real could be carpal tunnel.

Now I have an appointment with a neuro in 3 weeks (God the waiting is killing me). And for most of today I've had a weird headache. Not really a headache but rather a weird tightness that runs from the back of my scalp down to my neck. So off my imagination goes again.

I think I'm going to need Xanax to survive the coming weeks.

I guess I just wanted to see if this sounds like a normal presentation of MS or not?

I wouldn't jump to conclusions. MS is a diagnosis of exclusion. In effect, there are many conditions which can cause MS like symptoms and these will need to be tested for and eliminated as a possibility before an MS diagnosis can be made. For example, the foot drop could be due to something such as a pinched nerve.

Wewoodson wrote:I also wonder if it's ok to exercise. I haven't for the last week, since it seems running worsened the drop foot (and now I also recall that lifting legs really affected it, as I fell down the day before running after leg presses, and now I know why). Anybody have any thoughts on that?

Exercise is good for many things. If running is a problem, then try something else such as bicycling.
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Re: Honestly pretty terrified in Dallas

Postby mignudo » Sat Jun 04, 2016 1:36 am

I am sorry you are struggling through this. It may or may not be MS. I have MS and I had all the symptoms you have described. You are allowed to be afraid, I still am. MS has really affected my life. Don't be afraid. I am sorry for your Mother. I was always told it skips a generation. My Grandfather had MS. My Father thought he did, but I do. It is very hard to get support, at least for me. You have your Mom, and she will help you through this. I pray everything turns out. I wish I had a Xanax. They put me on clonzapem. I think I spelled that wrong. It does not matter if your male or female. Don't let your Dr. tell you that. I was diagnosed at 21. My parents did not want to believe it. I stopped going to the Dr's. Now I am 49. They both passed away. I have been in the hospital 12 or 15 times since 2009. Solu Medrol which makes me nuts. My point is. Listen to your gut. I did not. Now I am suffering. There is no cure. Take Care. Let me know how you make out. My name is Maria.
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Re: Honestly pretty terrified in Dallas

Postby mignudo » Sat Jun 04, 2016 1:43 am

Pinched nerve. I know when I have a pinched nerve. It is a long process of getting diagnosed. Who wants to be diagnosed with MS. A foot drop does not cause a pinched nerve.
I apologize. You will have to go through a lot of test. MRI's; Spinal Tap, etc. Listen to your Dr. and if you don't like him get a new one. I did. My first neurologist put me on so many meds I could not function. I found a really good Dr. The only thing I struggle with is my memory and a lot of pain.
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Re: Honestly pretty terrified in Dallas

Postby ElliotB » Sat Jun 04, 2016 3:24 am

Hi and welcome to TIMS. Make sure you see a neurologist that specializes in MS. Hopefully that is who you have your appointment with.
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Re: Honestly pretty terrified in Dallas

Postby lyndacarol » Sat Jun 04, 2016 6:39 am

Wewoodson wrote:I'm a 44 year old male in good health.… My mother has had MS for 33 years.

Now I have an appointment with a neuro in 3 weeks (God the waiting is killing me).…

I guess I just wanted to see if this sounds like a normal presentation of MS or not.…
Welcome to ThisIsMS, Wewoodson.

I share the ideas of others… As NHE has said, "there are many conditions which can cause MS-like symptoms." And as mignudo (Maria) has said, "It may or may not be MS."

During this 3-week wait until your neuro appointment, I suggest that you see your family doctor again and start with a thorough baseline physical exam (request your own copy of any test results – it is important to have the actual test result numbers).

I think it is important to ask for a vitamin D blood test (the "25-hydroxy D" test) to be included – this is not routinely done, it must be specifically requested. Even living in Dallas (the sunny South!), you can be deficient. Over 1/2 of the world's population is deficient in vitamin D. (Modern society is no longer working outdoors in the sunshine all day long.)

A long-term vitamin D deficiency can result in neurological symptoms, such as you are having.

[Just as a matter of curiosity… Do you know if, as an infant, you were breast-fed?]
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Re: Honestly pretty terrified in Dallas

Postby Wewoodson » Sat Jun 04, 2016 1:58 pm

Ok. Whatever is going on isn't staying static. Now my lower back is very angry. Not numb or tingly just feels like my lower back is out of whack. Probably doesn't help much diagnostically. Could be MS causing it, or could indicate I have back issues which actually are causing the other problems...
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Re: Honestly pretty terrified in Dallas

Postby lyndacarol » Sat Jun 04, 2016 4:02 pm

Wewoodson wrote:Ok. Whatever is going on isn't staying static. Now my lower back is very angry. Not numb or tingly just feels like my lower back is out of whack. Probably doesn't help much diagnostically. Could be MS causing it, or could indicate I have back issues which actually are causing the other problems...
Or… Could it be muscle spasms? Low magnesium levels can have a negative effect on muscles.

It might be useful to add an RBC (red blood cell) magnesium test to the vitamin D test you request from your family doctor. Neither test is part of routine blood testing; they must be specifically requested.
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Re: Honestly pretty terrified in Dallas

Postby NHE » Sun Jun 05, 2016 2:22 am

mignudo wrote:Pinched nerve. I know when I have a pinched nerve. It is a long process of getting diagnosed. Who wants to be diagnosed with MS. A foot drop does not cause a pinched nerve.

I never implied that foot drop caused a pinched nerve. I stated that there could be other reasons than MS for why one might be experiencing foot drop.

http://www.mayoclinic.org/diseases-cond ... n-20032918

http://emedicine.medscape.com/article/1 ... verview#a6

http://emedicine.medscape.com/article/1234607-overview
Foot drop can result if there is injury to the dorsiflexors or to any point along the neural pathways that supply them. Foot drop can be associated with a variety of conditions, including dorsiflexor injuries, peripheral nerve injuries, stroke, neuropathies, drug toxicities, or diabetes. The causes of foot drop may be divided into three general categories: neurologic, muscular, and anatomic.


http://www.webmd.com/a-to-z-guides/foot ... treatments
What Causes Foot Drop?

Foot drop is a symptom of an underlying problem, rather than a disease itself. It can be temporary or permanent. Causes of foot drop include:

  • nerve injury
  • brain or spinal disorders
  • muscle disorders

Here's some more detail on these causes:

Nerve injury. Most commonly, foot drop is caused by an injury to the peroneal nerve. The peroneal nerve is a branch of the sciatic nerve that wraps from the back of the knee to the front of the shin. Because it sits very close to the surface, it may be damaged easily.

An injury to the peroneal nerve may also be associated with pain or numbness along the shin or the top of the foot.

Some common ways the peroneal nerve is damaged or compressed include:

  • sports injuries
  • diabetes
  • hip or knee replacement surgery
  • spending long hours sitting cross-legged or squatting
  • childbirth
  • time spent in a leg cast

Injury to the nerve roots in the spine may also cause foot drop.

Brain or spinal disorders. Neurological conditions can contribute to foot drop. These include:

  • stroke
  • multiple sclerosis (MS)
  • cerebral palsy
  • Charcot-Marie-Tooth disease

Muscle disorders. Conditions that cause the muscles to progressively weaken or deteriorate may cause foot drop. These include:

  • muscular dystrophy
  • amyotrophic lateral sclerosis (Lou Gehrig's disease)
  • polio
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Two and a half months later....

Postby Wewoodson » Tue Aug 23, 2016 11:59 am

Well, the initial MRI (no contrast) was completely clean on the MS front, but I had multiple bulging disks, including spondylosis in the cervical back, and spondylolisthesis (with pars defect, rotation, and a cyst) in the lumbar. Bloodwork (just vitamin Bs and one other) were good. I saw both a neurosurgeon and a neurologist and they both felt the disks and related issues were the cause. I went on anti-inflammatories and a muscle relaxer, and started PT with both cervical and lumbar traction.

The good news is the drop foot and the tingling/numbness in my hand and foot went away. But back/neck issues persisted, eventually leading to tingling in back of head. Then leading to tingling in face (both sides but primarily on left) along trigeminal lines which waxed, waned, and is now waxing again. Finally leading to occipital issues (worse back of head, headaches in temples and behind eyes, both sides but mostly right). All of which appeared better if I relaxed at the end of the day, and seemed to have postural relations (worse when head in a bad position). Then last week hip pain on one side (same side as drop foot), and then pain in both feet, and now pain in both hands/fingers. So now I have simultaneous pain or tingling with occipital nerve, trigeminal nerve, both feet, both hands, and back, which I would guess equates to polyneuropathy.

I saw the neurologist again today, and they seemed to believe it could be MS after all, but would be an atypical presentation. They also suggested autoimmune issues as a potential cause. The next step is another set of MRIs (brain, cervical, thoracic, all with and without contrast). And a long 3 weeks until another appointment. Uncertainty is hard.
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Re: Honestly pretty terrified in Dallas

Postby SnappyK » Wed Aug 24, 2016 12:45 pm

This sounds all too familiar to me. After being misdiagnosed in July 2015 with achilles tendinitis, misdiagnosed in August 2015 with tarsal tunnel, and misdiagnosed in September 2015 with "nerve inflammation", I was misdiagnosed in January 2016 as having spine issues based on MRIs showing bulging disks, spondylosis, etc. I did physical therapy but kept feeling worse. Then I got new symptoms that clearly couldn't be caused by a spine issue. So I was misdiagnosed as having small fiber neuropathy. After seeing four more neurologists, the only thing I'm sure of is that I don't have a classic presentation of anything in particular. The general neurologists think I have MS. The MS doctors think I have something other than MS, but they don't know what.

I get that same damned tightness in the back of my neck and the bottom back of my head. Usually sticks around for several hours to a few days and then goes away as mysteriously as it appeared. I've tried physical therapy and that hasn't helped at all.

I live in a major metropolitan area and I've seen well regarded doctors. None of them can agree. Between three radiologists and six neurologists, at most two have agreed on anything. So I caution you, if your condition is not a "classic presentation", see multiple doctors. Get more than one opinion. Be aggressive with your pursuit of a diagnosis and treatment.

Sounds like you haven't had a brain MRI yet? Hopefully that will give them a better idea of what's going on. You might also want to push for a lumbar puncture. Have you had your general inflammation levels tested yet? (C-Reactive Protein, ESR/Sed Rate)? Mine were quite high, and a million other tests showed no cause until I had the lumbar puncture. The lumbar puncture has also ruled out a bunch of other conditions. I had heard such horror stories about the pain of a lumbar puncture but I didn't think it was bad at all. Certainly uncomfortable but I found the nerve conduction tests/EMGs on my legs to be way more painful.

Good luck to you in finding answers. You deserve them.
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Re: Honestly pretty terrified in Dallas

Postby Wewoodson » Fri Sep 23, 2016 1:31 pm

So someone was talking about Vitamin D...

lyndacarol wrote:I think it is important to ask for a vitamin D blood test (the "25-hydroxy D" test) to be included – this is not routinely done, it must be specifically requested. Even living in Dallas (the sunny South!), you can be deficient. Over 1/2 of the world's population is deficient in vitamin D. (Modern society is no longer working outdoors in the sunshine all day long.)

A long-term vitamin D deficiency can result in neurological symptoms, such as you are having.



I now have had a second set of MRIs, this time with contrast. I have had tests for B1, B6, B12, D, Lyme, Heavy Metals, Copper, and a bunch of auto-immune stuff. My neurologist feels really strongly they would have something on the MRI or elsewhere if it was MS (good news but not dispositive). The ONLY thing which came back abnormal was Vitamin D. Its at 21 instead of the recommended 35. Getting on supplements now. Sure hope this helps.
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Re: Honestly pretty terrified in Dallas

Postby lyndacarol » Fri Sep 23, 2016 4:57 pm

Wewoodson wrote:I now have had a second set of MRIs, this time with contrast. I have had tests for B1, B6, B12, D, Lyme, Heavy Metals, Copper, and a bunch of auto-immune stuff. My neurologist feels really strongly they would have something on the MRI or elsewhere if it was MS (good news but not dispositive). The ONLY thing which came back abnormal was Vitamin D. Its at 21 instead of the recommended 35. Getting on supplements now. Sure hope this helps.
Yes, your vitamin D level of 21 ng/mL was very low! According to the California-based GrassrootsHealth group (http://www.GrassrootsHealth.net) the vitamin D level should be at least 40-60 ng/mL.

They offer the following chart to help determine the dosage of a supplement that likely to be necessary to raise a certain level to a specific, more acceptable level:

http://grassrootshealth.net/media/image ... single.pdf

But, remember, there is wide variability in people's response to the same dosage. Some people will maintain 20 ng/mL on a dosage of 5000 IU per day; while other people on the same 5000 IU dosage will reach and maintain 120 ng/mL. It is the serum level that is important, not the intake amount. After 3-6 months of supplementation, your doctor should retest.

It is not a quick fix – it will take some time after raising the serum level for the affected body system (the nervous system in the case of MS) to heal.
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