Hi, I know exactly what you're starting to go thru and how it feels.Please check this out, It changed my life. https://www.youtube.com/watch?v=KLjgBLwH3Wc
Hi PW - Welcome to the group.
Many of our visitors have visual issues that make it impossible to read large blocks of text. I have taken the liberty of breaking up your post.
"This is a multifaceted question. I am right handed. When my left hand is at "rest" and not needed for a task it has a tendency to go into a fist and sometimes the wrist curls inward to my body or my whole arm comes up toward my chest.
I can open my hand but have to consciously force it. I have to make an effort to force the fingers out straight. Sometimes I'll just try and stretch the fingers straight, or even sit on my hand.
The left hand muscles really feel like they are being stretched. After stretching my left hand/fingers it immediately wants to curl back up. Sometimes it gets so tight that I have pain in the arm muscles. This comes in episodes lasting anywhere from a day to several weeks. It has gotten progressively worse over time.
So here is the deal I also have extreme fatigue, charlie horse like muscle spasms (mostly in my feet) leg weakness, paresthesia (tingling, electrical sensation in various parts of body, and burning in bottom of right foot), and nerve pain in my legs as well as tipsy, uncoordinated, off balance sensation (all intermittent).
I have had an EEG (did not do evoked potentials) come back abnormal, but was told that I probably don't have seizures. I had a brain MRI come back normal, but have not had a neck MRI. Has anyone else had arm symptoms like this and if so was it related to MS?
My neurologist says because my symptoms only last a few days usually, and not weeks or months, that MS doesn’t do that? From someone with experience is that the case? He also says that because I can force my hand to open that it is not a contracture or spasticity (personally I think he is an idiot.).
Both my primary physician and a PT have told me it is spasticity. So is it still spasticity if I can make the hand open? Also, told me could not be nerve compression in neck because it is mostly one sided. That does not seem reasonable to me. Could this be a nerve compressed in neck even know its predominately only the left arm?
Could this still be MS despite the fact that the brain MRI came back normal? Finally I do not have insurance and am a free clinic patient (therefore the general consensus is that I am a complete idiot; just having stress, faking it for attention, catastrophizing, overly aware of body sensations, etc.….).
I have spent several thousand dollars and can’t figure out anything. Should I continue trying to press for more tests or wait till things get worse? I have to go to the doctor the free clinic tells me to, unless I pay full price out of pocket. The Neuro I have seen clearly doesn’t want to bother doing anything else since I look healthy and there isn’t a tumor growing out of my head.
If I decide to see someone else, does anyone know a decent neurologist in Virginia who will listen to me? I don't know if You are allowed to use doctors names. If not is there somewhere I could go that would be able to give me names.
I don’t want to waste any more of my time and money on someone who isn’t interested or willing to help me. Sorry for all the questions. I am just looking for a direction to go."
Thank You! I am sorry. I just saw the welcome post that mentioned this. I was going to re-post it correctly and you beat me to it.
Dr. Wahls and her dietary approach to MS have many supporters. I don't think we should put prettyworld's cart before her horse however :-)
PW - As you can force your hand open, it's a shame we can't to the same with your neuro's mind! The minimum time frame for a symptom to be present, and qualify as a relapse, is 24 hours, not weeks or months. Nor does a clear brain MRI rule out MS.
Your symptoms surely do not eliminate MS from the list. Diagnosing MS can be a long and frustrating process. It often includes seeing multiple neuros. While your lack of insurance complicates things, I would urge you to seek another neuro opinion.
Thank you Kyle. My symptoms do last longer than 24 hours. They vary in intensity but have gotten progressively worse over the last year. I will look into finding another neuro. Thank you for your support. I don't know that this is MS but from what I have researched on my own the symptoms seam to fit. However I think bouncing things off people who have dxed MS may give me a little more insight as to whether my symptoms really fit early MS or if it is likely something else.
I just wanted to add that nerve compression is often one sided for heavens sake. The nerves travel out of the foramen on either side of the spinal discs - affecting the side it is going to. If you have a cyst or other obstruction on just one side - the symptoms will be on just the one side. Strange neuro!
Also wanted to say that the brain isn't the only place leisions are located in MS. They are often only on the spine.
When your insurance is absent of poor (I have Medicaid), its often hard to get a doctor interested. Unless your symptoms and test results can't be denied - which was true in my case. My dx came as a surprise as I already had a Systemic Sclerosis dx plus others.
Blessings to you. And personally, I don't necessarily think having the dx is worth your life's savings since treatment doesn't really change the ultimate outcome. It often reduces flairs (very worth it for many) but not the end disability a given patient has. (according to most research)
I am unable to tolerate treatment and so dont use any - other than anti-spasmodics and pain meds. I tried IgG infusions for a while and chemo for the Sys Scl, but the side effects were too difficult to tolerate. I wish you the best. I know that knowing us very important and it can be frustrating. We've all had long journeys.
I forgot to add that my hands do what you describe, but it is from the systemic sclerosis. The tendons pull my fingers in and it becomes very difficult to force them open.
Sorry I don't have the internet at home so I wasn't able to check my messages. Thank you for letting me know about the nerve compression being able to cause symptoms that are just one sided. I didn't think I was crazy. I really think the guy doesn't know what he is talking about. I appreciate your encouragement. I go see my regular doctor tomorrow so I will talk to her a little and see if she thinks I should do any more tests. I am just frustrated but I know there are a lot more people who have had similar experiences. Thanks for taking the time to show an interest and answer my question.