Any suggestions?

[Brian30]

I am currently 32 years old, 5 ft 11 in, 175 lbs.

About 5 months ago, I started noticing that my hands would cramp up when working with small things, like threading a screw or a bolt. I didn't really think a whole lot about it at the time. The cramping may not have a thing to do with what you're about to read. I just thought that I would include that in case it is a symptom.
As time went on, I started noticing weakness in my right arm (only in a curling motion). As time went by, it got to the point that I was having a hard time buttoning my pants when getting ready for work & even turning the ignition in my truck. I don't have what I would call pain. It's kind of a numb feeling that starts from my shoulder & goes all the way down to my thumb (primarily in my bicep & hand). At this point (Oct. 23, 2007) I can barely curl a loaf of bread. I have noticed some atrophy in my right hand & in my bicep/forearm area. I do have fascilations, but have had them for as long as I can remember. I have been to an Orthopedic Doctor who looked at me for about 10 minutes & said that he thought it was nerve related. I went to a Neurologist & have had a nerve conduction study performed on my leg & both arms as well as an EMG. I have also had an MRI of my neck & spine. I have had blood work done. Nothing was found abnormal. And this past Friday, I had a myelogram & a catscan performed. I re ceived the results today & tehy were all good, which leaves me more confused.
I am only having weakness in my right arm & hand. I fear that this test will come back okay (no pinched nerve, bone spur, etc.) & that I may be facing something like a motor neuron disease like ALS. ALS or any motor neuron disease does not run in my family.

A few questions:
1) Is it possible that all of these tests can come back okay, but there is in fact a pinched nerve or a bone spur that the Doctor is not seeing?
2) Can a Chiropractor fix something like what I am going through?
3) Is it possible that I have something going on in my arm itself? I have not had an MRI of my arm.
4) Do I fit the symptoms of someone with ALS?
5) Is ALS detectable through any kind of test or are you just diagnosed with it when nothing surfaces from other tests

[Brian30]

Thanks for your thoughts. I am hopeful that I am one of the few that may fully recover from this. Only time will tell.

[patsy10]

I'm glad you have a diagnosis but I'm very sorry to hear about what you have.  I have researched CIDP as well.  It sounds like it's treatable from what I have read.  I thought I could have that.  I fit the symptoms except that it said diminished reflexes were a sign.  Mine are just the opposite, hyperactive so I crossed that one off my list.

[Lizziegirl]

Having a very bad day today.  I have massive pain in my shoulder area, hands are shaking...face and jaw are very weird...I can't take this any longer...why won't they help me??

[Brian30]

Hi Lizzie. No, he didn't mention anything about Paraspinal Denervation.

I have Googled a million hours over the last few months. I know what you mean. There's good information out there, but it will also scare you to death. I have stopped looking up my symptoms. I have finally gotten a certain diagnosis. I have been thoroughly tested & my Dr. has reassured me that based on my physical exam, my symptoms, & my EMG & NCV results that I do not have ALS. In his professionalism, he is 99.9% sure that I don't. Alot of times patients are diagnosed with ALS that actually have MMN or CIDP because it so closely mimics it. That is the importance of having the right Doctor diagnose you. These guys specialize in ALS. I am so thankful that I was referred to this Doctor. I know that prayer has been answered. Just knowing what I'm dealing with makes all the difference in the world. When you don't know, you always think the worst, and that will drive you insane. I am just fortunate that Dr. Pruitt is right here in Augusta, GA. I have closed the book on ALS. Right now I am just focusing on getting better. How are you doing?

[Brian30]

Carolyn,
       I have some of the same pain in my right upper outside thigh area. It's like a 6 to 8 inch patch that feels like a 3rd degree burn, but when I touch it, it's no warmer than my other leg. It is also numb when I touch it. I mainly notice it at night when I lay down. I asked my Doctor about it & he said that it is just nerve pain & that it goes along with CIDP. He said that after my treatments, that it should go away over the next several weeks.
      I have been extremely impressed with this Doctor. He specializes in Neuro Muscular Diseases & he also teaches it at the Medical College of Georgia. He & his partner are extremely knowledgable & experienced in this field. They are head & shoulders above my Neurologist. I would highly recommend him to you or anyone that is dealing with a similar problem. Where do you live?

[Lizziegirl]

At least it's treatable!!!

Did it mention Paraspinal Denervation at all??  I Google that and the 3 dreaded letters pop up!!!  ALS.

[CarolynV]

Wow.  A different dx, but still a treatable thing.  Good for you.  I'm so jealous.

I truly wish my dr could just figure out what is wrong with me.  Starting last night and today I've had a lot of pain in my legs and my arms are just heavy.  Then last night, my upper thigh had the feeling of being sunburned.  I asked my husband if there was a rash there and he couldn't see a thing.  Just weird things are happening with my body.  I'm just barely able to take care of my kids.  I'm letting them watch way too much TV but I can't really do much with them right now.  In fact, I'm looking into putting them into preschool.  I hate diong that, but everyone says I need to take care of myself now.  

Glad to hear that you will start recovering in the next couple of weeks.  That will be a good Christmas present for you.

CarolynV  

[Brian30]

I had my spinal tap yesterday. Before performing the spinal tap, my Dr. informed me that he had changed my diagnosis based on the after study of the EMG & Nerve Conduction Study from Tuesday's MMN diagnosis. He has diagnosed me with CIDP which stands for Chronic Inflammatory Demyelinating Polyneuropathy. It's easier to say CIDP. Anyway, it is also an autoimmune disorder & the treatments are the same as they are for MMN. Recovery results are also the same as MMN. It is a very similar & rare disorder. Just for reassurance, I asked my Dr. "Are you sure that I don't have ALS"? He said "I'm sure". That in itself was a huge weight lifted off of me. Now that I know what I'm dealing with, I can look it in the face & fight it until I recover. Recovery usually starts within 3-6 weeks after treatment starts. I am doing fine from the spinal tap. How are you?

[CarolynV]

Gosh Brian, I wrote you a long comment and the darn thing didn't post.  Oh well.  

So glad that you got a dx!!!!!!  And it's treatable.  Great news!!

How did your spinal tap go?  Hopefully better than the last.  

I had an MRI of the brain on Monday and dr said it was normal.  He really thinks that this is a virus that attacked my nervous system.  He put me on an antidepressant that will help me sleep at night (I'm awakening from pain) and I took it last night.  I guess I have fallen into a depression over this whole thing.  It made me groggy and I fell asleep but it wasn't great sleep.  I'm not sure if it was because I couldn't sleep or because my husband was awake until 2 in the morning doing work and that threw me off.  Meanwhile, yesterday I washed down my backyard with the hose and then cleaned my downstairs and about 1/2 later I felt like I was going to fall over from extreme muscle fatigue.  It's so frustrating to not know what is wrong.  I was fine 2 months ago (or so I thought).  My neurologist wants me to wait a month and see if this starts to go away.  I can only hope and pray.  In the mean time, I guess I am going to have to get a cleaning person and put my kids in daycare a couple of times a week to get some rest.  

Once again I'm so happy for you.  Hang in there though.  I'm sure it's still frustrating for you.  I'll keep you in my prayers.

CarolynV

[Lizziegirl]

Thank god!!!!

[Brian30]

I have been diagnosed with MMN (Multi focal Motor Neuropathy). It is an autoimmune disorder where my immune system is mistaking the shield around my nerves as something foreign in my body & it (my immune system) is attacking my nerves. The only difference between this and ALS is that ALS has both upper & lower neuron symptoms where as I only have lower neuron symptoms (Thank God!). The odds of someone getting ALS are 1 out of 100,000. The odds of someone getting MMN are also 1 out of 100,000. Both diseases similarly mimc eachother by some of the symptoms. So you can imagine how worried I've been. Unlike ALS, MMN can be treated & most people can recover their lost strength. I had another EMG & Nerve Conduction Study performed yesterday which more confirmed that i don't have ALS. That is not a pleasant test by the way. Tomorrow, I will have a spinal tap & spinal fluid will be collected & tested. This is an important piece of the puzzle in diagnosing a problem like mine. I was told that I will be receiveing treatment next week for MMN. I still can't believe that I have something like this. Thanks for asking about me. I will keep you updated on how my treatments go. How are you doing?

[CarolynV]

Brian,
I was just wondering how your appointment went.  Hope you had all your questions answered.  Wishful thinking, I know, especially in our situation.  Take care.

CarolynV

[Brian30]

Did you have any pain associated with your pinched nerve? I don't really have much pain. More tingling & numb feeling than anything & it's all from my bicep down to my hand. Occasionaly I will have some pain in my hand or bicep. Did you have any loss of strength in your arm or just your hand? How did the Chiropractor confirm that you had a pinched nerve?

[Telephonejack]

Brian,

When I was working for the telephone company as a lineman, I had a similar situation. I am a "Lefty" so it was my left side that was affected. I got to the point I had no strength in my left hand and could not squeeze a pair of pliers to cut an 18 gauge wire. What I found out is that I had a pinched nerve in the area of my spine between my shoulder blade area. My Chiropractor adjusted my spine and I was back to normal in a few weeks, I still have to see hime from time to time to have hime readjust the area bewtween my shoulder blades. I noticed when he would press that area of my spine between my shoulder blades it was tender due to inflammation. He knew exactly where to look. I hope this helps. I believe in Chiropractic therapy as I call it "Common Sense Medicine", in that, every nerve in our body runs through our spine and when  our spine gets out of whack, things go wrong.

[Brian30]

I have not had an MRI of the brain yet. I will be seeing a Neuro Muscular Doctor at the Medical College of Georgia this Tuesday & I'm sure he will want to do that as well as more blood work & possibly a nerve and/or muscle biopsy in the future. I think that this Doctor will figure me out. He is in the Book "Best Doctors in America" & he teaches on Neuro Muscular Diseases at MCG. I am anxious to know what I have, but I am also scared.

[patsy10]

It started as leg weakness but pretty much attacked the whole body at once.  It got worse and worse then waxed and wained.  I don't have any muscle wasting that I can tell, just weak, heavy and painful muscles.  I went back and read your initial post.  No MRI of the brain??  That should be done.  There is no numbness or tingling in ALS.  Just muscle wasting and weakness.  Sometimes they cannot give you a definite diagnosis.  I get numbness on my left side that runs in a line from my face down to my foot.  It comes and goes.  It shows no abnormalities on any kind of testing.  Other tests that can be done are somatosensory evoked potentials.  It checks the nerve conduction from the entire body to your brain.

[Brian30]

Did it start in one particular part of your body & spread over time or did it just attack your whole body at once? Also, have you had any muscle atrophy/wasting? I have some atrophy in my right hand between my thumb & my index finger & overall, my right arm has lost muscle, especially around my bicep. My hand & my bicep are my two weak areas & it is only affecting my right arm for now, but my fear is that it is going to spread.

[patsy10]

Numbness, tingling, twitching, muscle pain and fatigue, bad nerve pain.  I may have lyme.  I had the rash etc...I had bad leg weakness a couple years ago and had trouble walking.  I have improved on antibiotics.  I exercise again but not like I used to.  I have no true diagnosis other than fibromyalgia which I think is a waste basket diagnosis.  I have had numerous MRI's etc... all normal.

[Brian30]

Thanks for your reply. What kind of problems are you dealing with?

[patsy10]

Good luck at your appt. I know exactly what those thoughts you are having are like.  It consumed my every thought for a long time.  I also look completely normal.  I'm muscular and fit.  People don't know a thing is wrong when they see me.  People say "you look great".  I don't know what to say when people say this.  I just say thanks.  I had all those fears about my job, etc...everything you described above.  Now I just deal with it.  I am feeling better with antibiotics.  I just take life a day at a time and try not to sweat the small stuff.

[Brian30]

Hi Carolyn. Sorry to hear of your problem. I don't have any problems in my legs. At least not yet anyway. I think the mental part of going through this is as hard or harder than the ailment itself. So many things go through your mind, like what if I have this or that? Will I end up in a wheel chair? Or am I dying? It's crazy how your mind wonders. I'm kind of like you. I can't just hang my head & cry. I have to keep going. I haven't been diagnosed yet so not knowing is very difficult to deal with. I am a Supervisor & have 20 people working under me. My biggest fear is that I will one day have to go to work & tell my boss that I can't perform my job anymore because of my problem. I'm not at that point yet, but if it spreads to my other arm or goes into my legs, I can see that day coming. Hopefully I will be diagnosed fairly quickly & that it will be a recoverable problem. My advice is to say a prayer daily & let God handle it. If he is sophisticated enough to create Man, then I know he knows exactly what's wrong with me & you. I just pray that I can be diagnosed & recover. The Internet can be very informative, but it can also be very scary to see what the possibilities are.

[Brian30]

I have finally gotten an appointment with Dr. Pruitt this coming Yuesday (11/13) at the Medical College of Georgia. I hear that he is awesome in diagnosing his patients. All that I want to hear is 3 things:
1) What it is, 2) That it is treatable, & 3) I can recover from it. I'm telling you, if you saw me, you wouldn't think anything was wrong with me. I'm in good health, don't smoke, drink occasionally, look great. But there is alot wrong with me. Just last night, I went to a Mexican restaurant with my family & when the waitress brought my Coke to me, I made the mistake of trying to grab it with my right hand & I dropped my drink onto my Dad's bowl of salsa, spilling it all over the table & floor. The waitress just thought I lost grip of my glass, but I truly didn't have the strength to take it from the waitress & sit it down. That is pretty depressing to me at 32 years old. Anyway, I will let you kknow how my visit goes on Tuesday. Thanks for asking. How are you?

[patsy10]

CPK looks for muscle breakdown which could indicate myositis or other myopathy.

[CarolynV]

Hi Brian and Lizzie,
First off, Lizzie, I'm glad to hear that you have a dx.  Praise God!
Brian, I'm so sorry for what you are going through and can relate somewhat.  Maybe you both can give me some advice too.  I have been having weird things happen to me for about 6 weeks.  It started one morning with strange pain in my calves.  I thought I had pulled a muscle, but knew that it felt different than that.  Then a couple of days later I started seeing twitches in my calves.  It has come and gone but mainly it's always there.  Mostly I just felt immense fatigue pain that felt as if I had been walking around Disneyland all day.  Then I awakened one morning to fatigue pain in my arms.  Looking back I had actually felt it about a week earlier.  Once again, the pain comes and goes and usually comes with exertion.  That day I decided to go to my doctor who wasn't in town of course and so decided to see a neighbor who is a GP.  He was awesome, did some blood work and led me to a neuro that same day who in turn did a physical exam and an EMG.  Everything checked  out fine and so we just wanted to wait to see how my bloodwork came back.  Once again, everything was normal.  I then had an MRI of the neck and that was clear.  So my neuro was leaning toward this being some sort of virus and told me to wait a month and see how things go.  The next week, I started having bad pain and twitches again in my calves and now it was in my back and stomach muscles. I also felt weak eye muscles at times and also had pain in my tongue when I ate peanut butter.   Pain in my back happened after an accupuncture appt.  Not sure if that correlates or not.  The pain in my back muscles awakens me several times at night.  Went back to neuro last Friday and he had some other blood tests done to check for Epstein Barre, Myasthenia Gravis and CPK (something found in the blood that detects nerve inflamation-I think).  So, I'm in the waiting game.  My dr. who's my neighbor said that I should call to get the blood results today and ask neuro to set up a spinal tap, brain and spinal cord MRI.  I called the office today to get the results and of course they didn't call back.  Errrrr.  Meanwhile, my neighbor (dr.) gave me more sleeping pills and said if I need more anxiety meds to let him know.  I was holding off on taking the meds a lot because I'm not big on taking pills, but I need it for my frame of mind right now.  I have two year old twins and a six year old and so I need some sanity for their sake.  I can't walk around crying all day because I don't know what's going on.  I've decided to take each day as it comes and since getting some rest I feel like I can at least take care of my kids, albeit difficult.  

Sorry for the long post, but I just needed to vent and get someone else's opinion who has been through stuff like this.  Thanks and God bless you both.

CarolynV