Sick of being in limbo...

[loadedbutane]

My name is Geoff. Im 34, married to a wonderful woman, and we have 3 cats that we consider our children.

I started having back pain that went down my leg along with a dragging leg in April 2010. Primary care at the time did absolutely nothing about it. This went on until November and my symptoms seemed to go away. March of 2011 I started having the same problems again along with severe weakness in my right leg and right arm. Was sent for X-rays that came back clear. Dr orders a lumbar MRI which I got done in August. By this time both legs are stiff and when the temp was 100+ it felt like I had 50lb ankle weights on. Lumbar MRI came back clean and I am currently awaiting referral to a pain management/neurologist. I rarely get any sleep because my legs will get extremely stiff and twitch and jerk all night. I now avoid the heat like the plague. I have discovered that a cold shower makes me feel like a million dollars. My mother had MS, along with her sister and her aunt.I just know I am ready for an answer (whatever it may be)so I could get the correct treatment.

Sorry for the long intro post but I knew people here could relate.

[hunterd]

WELCOME!!!!!!!! relate i can! it took 7 years and countless dr appointments before i got an awnser as to what was to blame for my problems (and probably 5 years of being to stubborn to see the dr).
there are many great forums here for different questions, don`t be shy, ask away. alot of us have been "in that boat", and you`ll get some great responces and advice!
best of luck.

[alliesmommy]

Welcome Loadbutane

Welcome! although I am sorry you found us because of your problems. I am fairly new here myself, but I can tell you this is the place to be. We all help each other and most certainly someone will have an experience similar to yours.

I agree with hunterd.... you may have to be stubborn or even push harder or even change docs to help get the answers that you need..... I was the kind of person that just kinda said "well they're the doctor, they know what they are doing" but after I got MRSA and it was left undiagnosed for 4 MONTHS and ended up in the hospital for a week, my whole attitude changed.

At the end of the day, it is your health and your life and when that doctor goes home at night, he won't even remember your name but you are the one that lives with it everyday.

[loadedbutane]

Thanks for the welcomes.

I am also stubborn about going to the doctor and I also have anxiety issues that cause me to forget everything when I am talking to the doctor. I am ready for the next visit though with a list of various symptoms I have been having.

[KoKo]

Hi Geoff

Welcome!

Sorry to learn that you are having arm and leg weakness and stiffness. I can really relate to having those symptoms.

Was sent for X-rays that came back clear. Dr orders a lumbar MRI which I got done in August.

I'm wondering why your doc didn't order cervical (neck) or thoracic MRI, since you also have arm weakness.

Lumbar MRI came back clean and I am currently awaiting referral to a pain management/neurologist.

Hopefully this neurologist will order more tests, so you will get some answers for your symptoms.

Let us know what you find out from the neuro.

Feel free to ask questions, and share what's going on. We'll be glad to help if we can.

Take care,
KoKo

[loadedbutane]

Thanks

In my PCPs defense I have shoulder problems that would hide the arm weakness unless its really bad that day.

It seems like every day a different symptom is the most bothersome. Today it is hand tremors when I try to do something with my hands (eating and especially writing is especially difficult) and leg tremors when i am still. I just got back from my mental health case manager and my wife had to do all my paperwork because I was unable to.

The temperature was much cooler today and it helped a good bit with walking.

I am going to call my PCP again on Monday and try to get in to get something to calm my muscles and tremors down. I am going to be much more prepared for this visit so she can pass the info on to the neuro. All I know is I need some form of relief. Luckily my wife and cats help me cope.

[loadedbutane]

Tremors and spasms got really bad last night and I ended up going to the ER (and I hate that place) to get some relief. They did a bunch of blood work and said everything was fine and it was something neuroligical. ER Dr. gave me a script for Ativan and it eased my legs down enough where I could sleep. Most sleep today as I have had all week combined.

ER Dr. is supposed to forward the info to my primary care who I will be making an appointment with 1st thing monday morning.

[Nicolemarie1313]

I feel your pain

I have had severe back pains since 2006 and have had a number of surgeries. Since then I've been having strange symptoms but have always just assumed it was related to the back. A couple weeks ago my left side of my face went numb I lost vision and my ears were ringing. I feel sleep deprived but that's all I do. I have 4 boys ages 15,11,3&1 so I have alot people to take care of other then myself.

I have to have a stimulator removed next week just to have a MRI to help back up the diagnosis of MS. My husband has been such a great support system for me and at times I feel he is so stressed but I can't just feel better. This is scary, but to start getting answers and moving on will def help me. I just started a 3 day dose of steroids hopefully they help. I hope you get answers soon. I know how frustrating it can be to just not know.

[loadedbutane]

Ok Im back yet again due to an insurance screw up (they left off a digit of my apartment number) and finally finding a good PCP.

I actually have all hyper reflexes except around my achillies which are non existant on the right and very weak on the left. Muscle spasticity was "off the charts". Luckily I was able to get in during a flare up and even got hot in the process flaring up worse.

She then called previous doctors and took notes of 2 other "remissions" with each one getting worse.

She prescribed baclofen and wow is that some good stuff. I can breathe easier, swallow easier, and actually move.

I have a CT, MRI, and a new neurologist appointment being made as we speak. My last neurologist cancelled my appointment after waiting 5 months. They got a chewing from my new PCP.

[jbell2435]

Wow Geoff, I was just reading this thread and realized it was from Oct. 2011!!

I am so sorry you still have not been able to see a neuro, it sounds like you really need to get some answers quick!

I was going to say that I too was going to a ortho doc for almost 2 years with the weakness in right leg, then dragging the leg along feeling, etc. and he sent me to neuro, but the neuro was not very good and said he didn't see anything other than the lumbar (small disc herniation).

When they finally started talking surgery for the disc last summer, I decided to go to the Mayo Clinic in Scottsdale. I had NO idea I had MS, so I explained what was happening and they agreed to accept me.

The rest as they say is history....

Wishing you much luck with your visits, glad the bac is working for you too!

Keep us posted please.

[JerryD]

Geoff,
Many people on this forum use Baclofen. I am glad it works for you. I understand that you have been searching for answers, which are in short supply. But on this site, people have been looking for many of the same answers as yours.
Do you think you have had all of the blood tests e.g. vitamin D, vitamin B-12, Lyme disease and all hormones ?
If you are short on hormones, you will suffer all kinds of problems.
You said you were having trouble sleeping. I use LDN and it increases my endorphin levels, which I think helps me sleep. And good sleep is worth everything. Good luck

[loadedbutane]

That is interesting about your back. My lumbar MRI showed minor disc protrusions and that was blamed initially.

I actually had a doctor tell me he didnt treat pain and wouldnt give me a referral for a "back ache".

If doctors would let go if their ego sometimes it would be a huge help to us all.

[loadedbutane]

Just thought I would update since it has been a while.

Tests so far

20+ viles worth of blood tests on a couple occasions
MRI brain and neck, MRI lumbar x2
LP without pressures was normal
EMG showed nerve issues in lower right leg and lower right arm.

Only issues found so far are 3 discs that "shouldnt be causing any issues". No abnormalities. Not MS but still has its ups and downs.

Get results of another lumbar MRI in the next couple of weeks at my next appt with my neuro. Luckily my neuro is wonderful and determined to find the cause of my issues. "Winter" hasnt been bad to me but I am already dreading summer...

Hope everyone is doing well and those in limbo find their answers. I just treat it as it goes. Doesnt need a label for me.