New to the board..seeking some advice

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

New to the board..seeking some advice

Postby sammie72 » Sun Feb 16, 2014 11:43 am

Hi my name is Sammie,

I am a 41 year old female and have not been given a diagnosis yet. My GP and Neurologist are leaning towards the direction of possible MS.

Please forgive me I have never posted on a forum I know this is a short novel and I apologize. I just don't know where else to turn.

Last year (2013) I saw my Neuro with symptoms of numbness, tingling, burning and weakness in arms and legs. EMG showed nerve damage from calves down, and nerve damage throughout my arms. MRI showed cervical stenosis with herniation C-5, 6 and 7. Neuro stated I had to get the upper part fixed and we would worry about the lower part later. All blood work came back good, with the exception of low vitamin D. Put on 10,000 units per week. Was sent to neurosurgeon who performed ACDF surgery.

In November 2013 (still have had numbness, tingling, weakness in legs) I started having lower back pain, pelvic pain and bladder retention. GP ruled out kidney stones, infection etc. but found herniation in lower back and I was sent to neurosurgeon again. Neurosurgeon stated there was nothing wrong with my back, ruled out cauda equina syndrome, and sent me to urologist and neurologist that day as a distressed patient.

Urodynamic study showed that my bladder was not receiving the signals to contract. Was put on bethanechol to assist. Urologist stated there was nothing more he could do. Neurologist concurred that the problem was not surgical and had to do with my spine/central nervous system. MRI of lumbar region was clean. Failed the pin prick test from thigh down, could not walk on heels, or in a straight line, struggled to walk on toes. I am having a spinal tap (lumbar puncture) March 3rd to rule out, or diagnose: MS, Lupus, Lyme Disease, etc.

Symptoms - I have had ongoing pain in legs (shooting stabbing) more so on the left, constant numbness and tingling in feet and legs. Feel like I am walking on glass. Very fatigued. Numbness and cramping in left hand. Woke up two days ago with a burning, aching left side pain from lower arm pit to waist. This pain continued to progress through the day and moved around to the middle and lower back area. By 5:00 PM I had to scoot my feet in order to "walk" The middle of my back felt like someone had whacked me with a baseball bat a dozen times. I have a pretty high tolerance for pain, but I am telling you I was crying because it hurt so bad. I could not find a comfortable position. GP suggested taking 2 hydro and a Gabapentin, if no relief then off to the ER. The intense pain lasted for about three hours and began to subside to a tolerable 7 after meds. Friday and Saturday I had to use a cane in order to walk around. Today I am still having the pain but it is not as bad as when the onset occurred. I am walking today without assistance, back to the normal limping.

I am on gabapentin and hydro for the daily pain I am experiencing. It is hard for me to take pills, but there is nothing that seems to give me relief. My Neuro and GP both stated that they can only treat my symptoms and keep me comfortable until I have a diagnosis. I have read that people experience pain, but I have a friend with MS who stated she never had this type of pain only migraines, vision problems and some lower back pain and she does not believe this is MS. I know everyone is different, but still it makes me wonder if I am on the right track.

After more history than you probably wanted to read, my questions are...Do these strong pains come and go like this? Does anyone live with constant 24/7 aches and pains? Any advice would be most appreciated. Sometimes I feel like I am going crazy.

Sincerely,

Sammie
sammie72
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Re: New to the board..seeking some advice

Postby jimmylegs » Sun Feb 16, 2014 12:38 pm

hi sammie welcome to the forum. do you have a copy of your tests? I am curious how far you have to go with vit d3, and also what else besides vit d3 might have been on the low end of normal. specifically, the usual electrolytes (serum calcium, potassium etc) plus serum magnesium, zinc and copper.
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Re: New to the board..seeking some advice

Postby sammie72 » Sun Feb 16, 2014 12:53 pm

Hi,

Thank you for your response. My "full blood work up" was actually done Jan of 2013. Neuro told me everything looked normal with the exception of the Vitamin D. Unfortunately those are the only results I do not have. No new blood work has been done since, with the exception of a vitamin D check back in June of 2013. Still on 10,000 units a week.

Sammie
sammie72
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Re: New to the board..seeking some advice

Postby jimmylegs » Sun Feb 16, 2014 2:42 pm

hey no problem :)

if the neuro ordered the tests, there probably wouldn't be *everything* you want to know nutrition-wise.

it could be worth a check just in case - I don't suppose there would be any chance you could ask for a copy of the bloodwork that was done in jan 2013???

if not, it could be an idea to ask for some mineral tests next time you are having bloodwork done.
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Re: New to the board..seeking some advice

Postby sammie72 » Sun Feb 16, 2014 3:56 pm

I will be calling my neuro's office tomorrow to report new symptoms in addition to having another attack of the intense side and back pain.

I will ask if they can send me a copy. It seems like the blood work tests are always the ones they keep for themselves...at least in my case.

Thank you again for your response. I have read other posts and am amazed of the courage, and support I have seen. It gives me hope that whatever this ends up being I will get through it. One of the most difficult parts is not knowing what is happening to me. It seems everything is changing so quickly.

I appreciate your time and your response, and will post if I am able to obtain the results.

Thank you again,
Sammie
sammie72
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Re: New to the board..seeking some advice

Postby jimmylegs » Sun Feb 16, 2014 5:02 pm

sorry to hear you're having an ongoing bad time.. hopefully the docs can and will send you a copy. and, no probs re the response. i'll keep an eye open for results :) ttfn
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