15 Years of off w/no definite Dx

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15 Years of off w/no definite Dx

Postby dmcomp » Wed May 07, 2014 5:14 pm

Hello, I have had some sort of relapsing/remitting nerve problem for the past 15 years. Before this current bout which has lasted 5 weeks, I was symptom-free for 3 years except for more fatigue for the past year.

I was dx'd 5 years ago with CRPS (RSD) b/c I had terrible burning pain from my waist down. Every time I have a relapse, my reflexes are hyperactive in the beginning, then they disappear for awhile, then they normalize until the next flare.

My hips and legs always get weak to the point of not being able to walk for a bit, then that gradually comes back.

I have had spasticity, for which they put in a Baclofen pump, and I have Dilaudid in it as well. This has been weaned for the past 2 years and it was almost totally turned off until I had to start bumping it back up last week.

This current bout started out with muscle twitching and leg spasms, pelvic pressure and pain, burning pain from waist down (which is where the burning pain always hits), and it hurts to have my clothing rub on my legs and feet. My hands and feet are swelling again and they had stopped swelling for almost the last 2 years.

This time around and some of the other times as well, I have dizziness or vertigo, my hands feel uncoordinated, I'm completely wiped out with fatigue, and when I walk, my muscles just quit after I've walked a little way. This past weekend I had a killer headache that didn't let up for more than 48 hours despite Excedrin and Ibup. It was worse when I was lying down. It hurt to move my eyes and my scalp was tender on both sides. I just spent a week in the hospital for testing and then 2-1/2 weeks in inpatient rehab, but I'm still very weak and tired and it's a huge effort to get up in the mornings and do anything. Last summer and fall, I was painting our house inside and out, redecorating our kitchen, dining room, bathroom, and living room, as well as doing lots of church ministry work. Now I can't do any of that.

I've had the usual gamet of tests but this time, my MRI's came back with some findings that have not been there before, or at least they didn't see them before, and my SSEP came back with prolonged nerve conduction time from my ankles to my brain. My brain MRI showed periventricular and subcortical lesions that they said could be ischemia but that nothing else looked like ischemia on my scan. They said other etiologies cannot be ruled out. My T-spine showed an area that they thought was an AV fistula but on further testing was ruled out. However, I had that same spot on my last T-spine MRI. My B12 was a little high, my iron and iron sat. was very low.

I've had trouble with BP and heartrate regulation during the duration of this illness, with BP's as high as 280/160 or as low as 78/38. Sometimes I have orthostatic hypotension, and sometimes orthostatic hypertention. This was proven on 3 separate tilt table tests and they said I have autonomic neuropathy. However, I've had very little issues with that over the past 3 years until this current relapse.

I've had double vision in the past, parotid gland infection, tongue sores, hypertensive retinopathy for awhile, 2 bouts of ischemic colitis at the age of 48 and 49.

I now have muscle twitching in nearly every part of my body, some muscle cramping in my lower legs and feet as well as left hand (left handed), inability to walk very far without complete exhaustion, using a walker and wheelchair, unable to maintain sleep, worse foot drop, terrible fatigue, hyperreflexia initially, spasticity initially, burning and tingling in my legs, vibrating in the muscles behind my knees when I walk or do too many exercises, a weird feeling in my head that makes me feel off balance and keeps me hanging onto things to walk and I have to go very slowly. My memory has gotten very bad, and I have trouble remembering lists of things, forgot my own address, and just forget the weirdest things. I also have begun having tingling and shivery sensations in my left leg and hip and buttock and irritability when my clothing rubs my legs.

My EMG also showed "upper motor neuron" problem.

Does this sound like MS, or some other neurological condition? I'm wondering why the Dr. said "probably nothing" on my SSEP, is reading the EMG as though I wasn't putting adequate effort into my part of the test, meaning I'm malingering, and says my MRI's are normal.

Like I said, I've had 3 years of normal life and lots of energy for the fist time in 12 years and this hit out of the clear blue, other than the fact that the day before this all began, I had been to the chiropractor for shoulder problems and he put me on a vibrating thing that made my legs feel like they were going to fly off b/c they were so hyper.

Any ideas where to go next? I'm trying to just keep up with life as much as possible. I can drive if I don't have to walk too far when I get there, but walking is the hardest thing because it's one step right after the next and no time to rest inbetween. The rheumatologist put me on steroids 2 days ago and I'm feeling at least a little peppier and my legs might be slightly better. They feel very heavy and it's hard to initiate movement. I remember feeling this way with some of the other relapses in the past as well. In the past, I've also had periods of psychosis, hallucinations, and being totally delusional, and I distinctly remember some of what I was thinking during those times and I was a complete fruit loop! But it was so real at the time. These would hit out of the clear blue during a relapse.

Thank you for any reassurances or ideas as to where to go from here to get my tests correlated by an independent party who maybe could see things a little more objectively.
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Re: 15 Years of off w/no definite Dx

Postby Wondering » Wed May 07, 2014 6:25 pm

Hi dmcomp

Sorry to hear about your troubles. I dont have much to suggest as I'm new to all this as well. I just wanted to say hi and wish you luck

Cathy
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Re: 15 Years of off w/no definite Dx

Postby lyndacarol » Thu May 08, 2014 9:47 am

Welcome to ThisIsMS, dmcomp. Since your last sentence invites ideas, I offer you mine.

You may not have MS; there are many other conditions with similar symptoms to rule out first. Somewhere along the line I hope a doctor has ordered all the following blood tests suggested by the University of Chicago:
http://peripheralneuropathycenter.uchic ... ndex.shtml

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

Be sure to ask for copies of all test results and keep your own file of them at home. (Don't settle for a nurse telling you everything is "fine.")

You stated, "My B12 was a little high," – the serum B12 test alone is not adequate to rule out a possible vitamin B12 deficiency; I wonder if all the other tests were done to rule this out (serum B12 test, serum folic acid test, serum homocysteine test, urinary methylmalonic acid test). A B12 deficiency can cause many symptoms like yours. And, remember, there can be a functional deficiency in the tissues even when there appears to be no B12 deficiency in the blood. Would your GP cooperate with a therapeutic trial of B12 injections, one a day for a week or perhaps once a week for 10 weeks?

http://www.youtube.com/watch?v=BvEizypoyO0

I highly recommend this 50-minute documentary, featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab). So many of your symptoms seem to fit the following list (and many others are mentioned in the video).

Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment (Your memory?)
Visual Disturbances
Migraine (Your headaches?)
Orthostatic Intolerance
Chest Pain
Tachycardia (Your heart rate regulation problem?)
Difficulty Breathing
Edema (This is swelling.)
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems ("2 bouts of ischemic colitis at the age of 48 and 49")
Blood Abnormalities
Neurological Lesions
Limb Movement Disorders (Your spasticity?)
Psychosis
Thoughts of Suicide


Testing for a gluten intolerance (or even celiac disease) is also important because gluten (found in wheat, rye, or barley) can damage the intestines in some people and interfere with the absorption of nutrients in the food.
Dr. Amy Myers, M.D., spoke on gluten sensitivity on The Dr. Oz Show:
http://www.doctoroz.com/episode/gluten- ... t-epidemic

@4:00 Dr. Amy Myers, M.D., speaks on the newly-recognized warning signs of gluten sensitivity: headaches, migraines, inflammation causing brain fog, depression from nutrient deficiencies (zinc, iron, B vitamins, omega-3 fatty acids, vitamin D), joint pain & arthritis, and skin rashes.

Even whole wheat is not the wonderful food for everyone – for some it raises blood sugar (a.k.a. glucose) causing the insulin level to spike. For any of several other reasons, your pancreas might produce excess insulin, too. I think a "fasting blood insulin test" is also a good idea (This insulin test is NOT the same as a glucose test.).

Your family doctor can order these tests.

All the best to you – please let us know how it goes.
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Re: 15 Years of off w/no definite Dx

Postby mcames12 » Sun May 11, 2014 5:27 pm

I would get a second opinion. Unfortunately, I've learned that neurologists can be lazy and often don't want to attribute symptoms to "stress" if you don't fit into a neat box for them. I'm onto my third neurologist and still undiagnosed. I hope you get answers soon --it's terrible to be in limbo. I wish you well.

Michele
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Re: 15 Years of off w/no definite Dx

Postby mcames12 » Sun May 11, 2014 5:29 pm

Oops -- typo -- I meant they *do* attribute everything to stress if you don't fit their diagnostic criteria.
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Re: 15 Years of off w/no definite Dx

Postby dmcomp » Mon May 12, 2014 4:37 am

Thanks for your posts! The orthotist I went to for my AFO's sais my feet look like charcot marie tooth feet and asked f anyone else in the family has issues. Actually 5/8 siblings have issues that could be from CMT! I'm asking my dr. to do some genetic testing which i've never had done. I think I'll get answers that way. I started taking klonopin again yesterday and my shakiness and twitching is much better. I don't like to take it bc its so addicting and makes me sleepy.
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Re: 15 Years of off w/no definite Dx

Postby lyndacarol » Mon May 12, 2014 6:57 am

dmcomp wrote:The orthotist I went to for my AFO's sais my feet look like charcot marie tooth feet and asked f anyone else in the family has issues. Actually 5/8 siblings have issues that could be from CMT! I'm asking my dr. to do some genetic testing which i've never had done. I think I'll get answers that way. I started taking klonopin again yesterday and my shakiness and twitching is much better. I don't like to take it bc its so addicting and makes me sleepy.

Since you are asking your doctor for genetic testing, investigate the MTHFR gene – mutation involved in vitamin B12 utilization – and consider asking to include testing for this.
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