FOOT DROP, Nueros Have no diagnosis HELP!! - Neuropathy Message Board

joastudio · 11-02-2006, 02:12 AM

Spelled Neuro wrong...I just joined this board to find help for my daughter, who at 28 (and now pregnant) has had foot drop for 1 year. SHE had NO surgery, and that is the most common cause of foot drop, or some injury trama to the leg/knee or back. She's had none she is aware of. Her foot started flapping one day she noticed it walking. about the same period, she started having hip pain. Doctor MRI'd and CT scanned, sent her to an orthopedic specialist who put her on prednisone for 3 weeks.

All Tests and bloodwork showed nothing. On her own, she went to a Neurologist. He worked w/her doing test for MS, MG, and many other things that can also cause this; tumor on the back, brain, etc. Nothing. She had what I am convinced is the only thing a neurologist KNOWS HOW TO DO... an EMG. THis is a nasty thing where they stick needles in your leg and send little electrical pulses to measure the degree of damage to your nerves. YOu can look up EMG on med. websites and it tells you better.

Months go by. Pain in hip mostly went away, and now we think if she'd stayed on the prednisone, which she refused at the time cause it didn't seem to be an answer, just something to do when they don't know anything, it would have gotten better. Her foot is worse all the time and her limp is worse. Leg is cold. Numbness. She can barely wiggle toes. Falling more.

SO...she went bad to her primary care doc, and he sent her to a 2nd neuro. He did another PAINFUL, EMG. Sent her to outpatient for a Myleogram/Spinal tap. (She was pregnant then and didnt know it.) This test showed nothing, but she had a horrific pain in her lower spine which shot down her leg, when they turned her over on the table. They were shocked and said this NEVER happens, and it eased off, and no doctor has been able to tell her why that happened. The doctor on duty just blew it off, saying that never happens. YET, they say there is nothing on her spine doing this. Leg is now getting warm again, but she can only move 1 toe. Limp is bad and she falls all the time.

This Neuro sent her to Another one, at Wake FOrest Univ. Baptist Med. Ctr, here in town. HE wasnt' available, so they gave her another Neuro. She saw my daughter, and all the tests results, had not CLUE, and said, well I could do another EMG.... she said no, so they she had to wait and see the 1st guy she was suppose to see, a month later to wait... By now she has lost all toe movement. (She is going to a Physical Therapist one neuro said to do. He recommended a brace $400... that is this plastic piece that is form fitted to bottomof her foot and goes up her leg to knee.) So she finally sees the 4th Neuro, a neuro-muscular specialist. He looks at the 2 EMGs she's had and all her tests, and says she showes improvement on the 2nd EMG, so he thoughtit was a virus and is getting better. Said a virus can run a course of 280 days before healing. Said to wear the brace at work to keep from falling, but not at home. Come back in 2 months.

She didn't fall as bad w/the brace, then she got weaker real fast from using it, we think, and started falling WITH it. She fell and twisted the knee. LEg is atrophying. The other leg is now showing signs of flapping. PTherapist gave up and said nothing he did was helping, go back to doc. She did, and he said hmmm well he didn't know.. must not be a virus...hmm he COULD do another EMG....

She got her primary care to refer her to a Neuro SURGEON. Waited 2 months for that appt. She saw him last week, he ordered 2 MRIs of neck and lower spine without dyes (pregnant), to see if anything they missed. NOTHING. nothing nothing nothing. He said he'd keep looking and consult his colleagues.

So here we are, her getting worse by the day, unable to go up/down the steps in her house, trying to sell house and move. She is so frustrated and worried she can't carry her baby across the room without falling. PLus, she started a new job in June. Stress factors.

We are willing to get her anywhere. Duke is here, but they won't refer her there; the doctors here just don't pursue it once its not an easy answer. Mayo Clinic... anything... but they won't refer her, and pregnant she can't have tests which they would start all over I guess...I hope someone reads this and will help my daughter. I"m in remission from stage 3 Lung cancer and have the biggest fear I won't be here to help her.

6foot3 · 11-02-2006, 03:27 AM

Joastudio ......I'll try to give you some answers. First you keep mentioning that they did an EMG but they should also always do a NCV test with it (nerve conduction velocity)This is where they attached an electrode and shock the nerves along with the EMG where they stick needles in the muscle and you tense the muscle and again these machines register it. Yes these are not fun but they have to be done so a qualified neurologist can tell if it ALS (motor neuron disease) or an Axonal or Demyelinating neuropathy. If she has numbness then you can rule out ALS. So then what causes these predominate motor neuropathys is an immune attack...

The most common of these are Guillain Barre and CIDP (chronic inflammatory demyelinating poly neuropathy).The immune cells (T-Cells) are attacking the nerve coatings (myelin) and hence paralysis is the result.Sometimes in Guillian Barre it comes after a tetnus or flu shot as this fires up the T-cells for the auto immune attack. Other times like CIDP it comes out of nowhere and slowly progresses worse. Besides the EMG/NCV test the gold standard on testing for this is the Lumbar Puncture and the spinal protein count is checked. If this is elevated then there's your problem.....

The predisone may have helped at first because its an immune calmer. So now what to do..If this is the diagnosis then treatments at the hospital about 4 times a month of IVIG treatments of Immunoglobulin is how they treat this.(calms the T-cells).If her neurologist did not give you answers like i did then find the nearest MDA clinic (muscular dystrophy association) in your state/area as they are the specialist to these muscle/nerve diseases. Look this info up and do some research then decide if thats what your looking at.

Best Wishes.......

michigani · 11-02-2006, 12:37 PM

Joastudio,

I probably can't help to much but I will try to give a little input. I'm not a doctor, but unfortunately my family has a mile-long rap sheet of neurological problems, including my own case of Muscular Dystrophy (I'm a 45 year old white male).

Reading your post the first things that came to my mind were many of the things that 6foot3 mentioned: ALS, Guillain-Barre Syndrome, Vasculitis (my sister had this and went through a similar ordeal which you described).

I tend to agree with the idea of contacting your local MDA Clinic. They've been great to me and will help steer you in the right direction even if it isn't MD (muscular dystrophy). I hope it isn't and that your daughter is okay. Best of luck. Sincerely,

Mark

joastudio · 11-03-2006, 03:18 AM

Thanks 6FOOT1 and MARK: she did have the electrode shocking that you mentioned, when having the 2 EMGs by 2 different neurologists. She was also given a globulin treatment intravenous, early on, at the 1st neurologist's colleague's suggestion. IT did nothing but give her the worst killer headache she'd ever known.
They have tested and all neuros say after seeing her tests, taht it is not MS, MD, or G-Barre. The last neuro said it was virus and would run course of 280 days and get better and go away. It has gotten alot worse, and now he says he doesnt' know what it is, and offers nothing else. This is a well known neuromuscular spec. with Wake Forest Univ. Baptist Med. Ctr. here in Winston-Salem, NC.!) Now he won't even return her call. Nor will the head of the Neuro. department, who wanted to stay informed on her case. Her primary care doctor told her to call them back and ask for a referral to someone that knows more in this area, but they won't return the ___call.

The neurosurgeon reviewed her repeat MRIs he ordered (no dyes-pregnant), that showed nothing new, this Tuesday. THis older man has been recommended to her by other people that got on results with neurologists, but HE fixed them. Every time I mention his name, someone knows of him.

I wrote him and asked that he please not give up on her, as he was our last hope. He called and included me on speakerphone with her permission, during her appt. He said there was no tumor, didn't think it was a virus, didn't see point in more EMGs, also because pregnant, didn't thing a nerve biopsy was a good idea as it could damage what is there, but would consult his colleagues and would stick with he til someone figured it out.

Yes she had a spinal tap and myleogram, which were also negative. The results were not in the records from the great WF guy, so the neurosurgeon is gonna request them.

Now she has sent me a link about motor neuron desease that eats your body til it kills you.
Thanks and write back; I invite questions and comments, I got nothing else to try.

6foot3 · 11-03-2006, 04:17 AM

Joastudio.....You can research these diseases on the web and see if they match up to her symptoms. They are ALS, CIDP and Multi Focal Motor Neuropathy. The only virus that causes paralysis that i know of is ''Polio''. Again i strongly suggest as did the other poster ''Mark B'' about contacting the MDA. When i last checked their site they mention that they are fighting 40 different Neuromuscular diseases. Jerry Lewis helps every year to raise about 60 to 70 million in research. They have a great site with info you're looking for and also where the clinics are....

Best Wishes to her.......