Unexplained neuro symptoms

[Sunset Beach]

Hi folks: I follow the forums and am grateful for the support and great advice from everybody. Although many of us have neurological symptoms, many also have no diagnosis or explanation to explain the weird things that have happened to them. After many blood tests, MRI's, EMG's an EEG, Lyme Test, B12 levels, I still don't know what happened to me. For five years I have suffered with chronic nerve pain. It mainly affects my left leg and foot, especially the arch area. My balance & coordination is affected; my lips tingle; I stutter or can't get the words out at all; my fingers and hands are numb, it feels like my fingers are being squeezed in a vice; the left leg is tight and I can't sleep as the pain is worse at night. I have internal tremors and sometimes I can visibly see my leg vibrating. My knee reflexes are hyper; I am light sensitive and my nervous system is hyperactive, as I can't stand loud noises or busy activities. I had a rash around my waist that moved up to my chest in the fall of 2001. I was sick for about two weeks with flu like symptoms and then things started going downhill. My leg would cramp so badly that I would get up and cry with the pain. Pain meds and muscle relaxers didn't help at all. Then I couldn't stand or walk properly anymore as I developed foot drop. I have high arches and after the foot drop, there was a change in my foot which has affected my walking. Some days the pain is so bad that I have to walk on my toes on the left side. The neuro continues to see me once a year and can detect the spasticity and the extreme sensitivity to touch on the sole of my left foot. When he first examined me he wanted to send me to the Mayo Clinic, as he thought I had an Upper Motor Neuron Disorder. However, the clinical testing did not support that theory as I don't have any lesions etc. I do have a bulge at L4 and some spinal degeneration, which is a normal part of the aging process. I am female, age 60 and have a history of allergies. I had chicken pox as a newborn infant, Bell's Palsey in my thirties and now have developed cholesterol problems. My blood pressure used to be low and now it is up to 150/90. This past summer, I had uneplained bouts of dizziness. My blood pressure spiked and was up to 180/100, but no reason why. It used to be about 118/79. My mother died of a brain hemmorhage at age 48 and Pernicious Anemia runs in my family as well as bleeding disorder. I may never find out the cause of my symptoms, but in my opinion, I think I had a virus that somehow triggered my immune system to attack itself. I have unexplained left sided weakness, but to date am without a diagnosis. A few days I have felt almost almost normal and then the evening comes and the pain overwhelms me. Fine motor skills are very difficult for me to do anymore, yet I can't explain why. Sorry this post is so long but there seems to be so many people with unexplained disorders. I think the Herpes Zoster Virus that causes Shingles and Chicken Pox as well as cold sores has been in my system since I was a baby. When I got older and my immune system was weaker, this virus reactivated and has caused these symptoms to manifest with ongoing chronic pain etc. Are there any people out there who also think their symptoms were caused by a VIRUS and is there any hope that we can reverse it. I take B12 injections monthly and orally on a daily basis. I also take Vitamin D and Omega 3 & eat a banana every day for my Potassium. I am now on low dose Lipitor for my cholesterol and a fluid pill for the edema and BP problems. My neuro prescribed Neurotin and said I could take up to TWENTY a day. My pharmacist thought that was a litte too much. I tried not taking it to see how I would do and the pain is just too much for me to handle. Hope to get some feedback from others who may be in the same situation. I go to acqua exercises about four times a week, as I really think it is very beneficial. I also have physiotherapy on my lef and foot and she gives me the TENS treatment and acupuncture. I can actually feel the benefits as if the blood is finally reaching my toes.

[jcc]

Have you been tested for Celiac Disease/ Gluten Sensitivity (gluten is in wheat, barley,rye) ? It is an autoimmune disease ... family history of PA and other things you mention put you at higher risk. It can present as neurological disease, even without testing positive for celiac disease, and that is just starting to be recognized. Meaning... no doctor would probably think to test you unless you asked.

If you've been tested, do you know what tests were ordered and what the results?

You can check The Gluten File for more info if you'd like to know more. The first three overview articles listed are the best, and then scan the side bar.

Cara

[Tootsie]

Hi there Sunset Beach,
Gluten sensitivity was one of the things that came to mind as I read your post but I see that Cara got her response in before I could. Cara has been very helpful in helping me understand the gluten sensitivity problem as my grandson has recently had to give up all wheat products.

The other thing that occured to me is Charcot-Marie-Tooth Disease. It is a hereditary motor and sensory neuropathy, passed through the female ancestor. I have 4 great nephews with the condition. Clues were the high arch and the foot drop. Ask you neurologist to evaluate you for this. It can cause problems with sudden drops in blood pressure, dizziness and other types of problems. Cheerio.

[deb309]

Hello. I am new here, but when I read your post, it sounded just like mine would have, before I became gluten free. I was diagnosed with Parkinson's Disease in 1989, and became disabled in 2000. Yep, I still have a residual tremor, but the rest is GONE! I have witnesses! lol Please, get tested, as it was the most wonderful diagnosis I could have received.

Best of luck to you. Debbie, KY

[jcc]

Hi there Sunset Beach,
Gluten sensitivity was one of the things that came to mind as I read your post but I see that Cara got her response in before I could. Cara has been very helpful in helping me understand the gluten sensitivity problem as my grandson has recently had to give up all wheat products.

The other thing that occured to me is Charcot-Marie-Tooth Disease. It is a hereditary motor and sensory neuropathy, passed through the female ancestor. I have 4 great nephews with the condition. Clues were the high arch and the foot drop. Ask you neurologist to evaluate you for this. It can cause problems with sudden drops in blood pressure, dizziness and other types of problems. Cheerio.

Tootsie, have you seen this? Do you know if your nephews have been tested for celiac disease? So many diseases have overlapping symptoms that misdiagnoses are common. And, it is always possible to have multiple things going on as well. I just remembered I had seen mention of Charot-Marie-Tooth Disease along the way, so thought I'd post this.

http://www.celiac.com/st_prod.html?p_prodid=842

Celiac disease is known to run in families, and in several of the cases, other family members were affected. Some were erroneously diagnosed with Charcot-Marie-Tooth disease, an inherited form of neuropathy due to genetic mutations. "Not all familial cases of neuropathy are due to Charcot-Marie-Tooth disease," noted Dr. Latov. "Peripheral neuropathy can also occur in association with other causes for neuropathy that run in families, such as diabetes or autoimmunity, for example."


Cara

[jcc]

Hello. I am new here, but when I read your post, it sounded just like mine would have, before I became gluten free. I was diagnosed with Parkinson's Disease in 1989, and became disabled in 2000. Yep, I still have a residual tremor, but the rest is GONE! I have witnesses! lol Please, get tested, as it was the most wonderful diagnosis I could have received.

Best of luck to you. Debbie, KY

Nice to meet you Debbie! Please stop by the Gluten Sensitivity forum and tell us more about yourself! And you might also tell your story in the PD forum.

Cara

[ainee]

G'day Sunset Beach - I had lots of neurological (nerve) symptoms. An Osteopath in 2001, felt my spine and said that I had "knotted up back muscles" - I guess over time, these knotted up muscles caused damage to my nervous system. I believe 3 injuries to my head and spine years ago, could have caused my many symptoms years later.
I didn't know anything about medical conditions, but the research I've done over the past few years, has certainly found some very interesting information. Apart from my injuries, I had Cadmium detected in a medical test. I had a few tests for Diabetes, thyroid etc., which were sus, but later tested as OK. I also had Herpies cold sore virus positive.
I've posted my information on many threads in BT - one in Success Stories - My Story May Give Hope by ainee - if you click on my name at the top of the posting, and click on - all postings by ainee - you will find all my posts. I've also replied to many, as my symptoms (although undiagnosed) are the same as many symptoms which cross over many different illnesses and conditions. I experimented with simple treatments, which suppressed and eventually after months of experimentation, my symptoms started to reverse. It wasn't an "over night fix it all", but I have reasonably good health most of the time. I hope my information gives benifit to others who are yet undiagnosed or who are still looking for a cause and/or treatment. I believe lack of oxygen can cause illness - and if the oxygen content in the body, tissues and cells is right, then those who are ill, may have better health.
ainee.

[babs]

HE is a rear disorder that they think starts with a viral infection and as you guessed causes your antibodies to attack. It can hit the brain alone or in conjuction with the thyroid. I was diagnosed a year ago and have been taking a high dosage of Prednisone all year. (now weaning down). It does seem to have knocked it out so far, but won't know for sure until Prednisone is down as low as poss. I won't give you all the details but refer you to the HE site on braintalk and to a patient and advocate Beverly Seminara or Mary Shomon. Both will come up if you do a web search for Hashimoto's Encephalopathy. Also on a search you will find articles by the medical community. It is presumed that there are many more casses in the US than are currently diagnoses, as many more exist in Japan and Europe. Good luck and stay warm.

[rose]

Welcome. You've already received some very good replies.

I would like to add that serious central nervous system problems can develop before lesions show up.

Also, the weirdness of your problems suggest things such as pernicious anemia (not an "anemia," but autoimmune loss of intrinsic factor), gluten problems, and thyroid.

When did you begin B12 treatment, and what type of B12 are you taking orally?

rose