Multiple Sclerosis

[kit4]

Hi, my name is Kit. I am new to this forum and I am looking for answers for my condition. My story began 2&1/2 years ago with severe fatigue. Thenwhen laying in bed at night I started experiencing SEVERE cramps in my front upper thighs. Then I developed tingling sensations and multiple twitchings on my entire legs. The pain was so severe and my legs swelled and my joints hurt also. I lost my job during this time. I ended up in the ER 8 times and was hospitalized. I had a rash on both feet and a biopsy confirmed psoriasis. I was so weak that I had to be carried. I was sent to a rheumatologist who diagnosed me with psoriatic arthritis-which is very similar to rheumatoid except that is runs in patients with psoriasis I was put on 15 mg of methotrexate, folic acid and naproxyn. My blood test had confirmed a VERY ESR level and my white blood count was very high. I started to feel better within 3 weeks.
Over the period of the past 2&1/2 years, I continued to have mild to moderate muscle cramps, twitching, creepies,sweeping waves of numbness all confined to my legs. I was sent to a neurologist who checked me for ALS and MS,had MRI of head and spine also with flare which seemed okay. My father had ALS and it does make me wonder. The thing that eases my mind about having ALS is that I do not have the drop foot or wrist,and my symptoms are on both sides. I had an EMG done on my legs. The results were nerve damage to both legs with the right leg having more nerve damage. The neurologist diagnosed me with myositis. When I went back to my rheumatologist he said that my symptoms were from the arthritis and to just trust him and cancel my next appt. with the neurologist. And so I did.Feet were fine during this time. Kept complaining to my rheumy that my symptoms were getting worse. I was blown off each time. My last trip to the rheumy left me feeling lost as his nurse told me that my symptoms were not related to the arthritis. How upset this made me. After being told for over 2 years that they were, and now I feel lost. And then I got even worse.
For over the past couple of months, The muscle cramps, tingling, and numbness have moved into both arms, and cramps have hit lower legs and feet. Also, I get nump creepies on the right side of my face. I have twitches and occasional pain in eyes, had 3 episodes of the room spinning,and I was actually falling(these occured over the past 6 months),My legs feel like someone has tied bricks on them on some days. My arms too feel very weak and hard to keep lifted as they feel tired and burny for no reason. I also have felt shaking sensations deep in arms a few times. I feel warm spots on skin for no reason, also cold wet sensations on legs, cold needles in my legs, my legs go numb from my feet up to my knees occasionally. I have felt like I had a bandana tied around my upper ankle and when this sensation stopped, my foot went numb. I have the muscle cramps in the bottom of my feet also. One night I felt as tho my hands were crossed when they were not. Very unusual. I do not have diabetes
I have done the online diagnosis to get an idea of what COULD be going on. The first thing up is perephial neuropathy The second is MS- and then others that deal with the spine or spinal ingury but this has been ruled out I believe by the MRI's. I went into my family doctor and he is sending me back to the neurologist. My appt. is the 8th of this month.
Also, I had joined the National Psoriasis Foundation over a year ago, and my symptoms are UNLIKE others that have been diagnosed with Psoriatic Arthritis. I have not had joint pain or swelling since I supposedly came down with this disease and do not believe I even have PA.
Please, if you have any information or advice, I would surely appretiate it as I and my family are very concerned at this point.

[TerryQ]

After my own hell with doctors only knowing their area I suggest see the neurologist (or 2). Also, try to find one that has more experience in MS then one who doesnt (you can use nationalmssociety.org to find local chapter and doctor). I started off with similar things and was sent to a orthopedic surgeon (actually 3) for knee/ankle problems. Thats as far as they think it was their area (orthopedic) and operated a number of times which not only didnt do anything, but has caused more problems. By the time they figured mine out I had alot of damage and now due to surgeries more problems/disability. I personally put too much faith in them since they were all top beverly hills doctors thinking they would look beyond their own realm and act like a doctor trying to help instead of what they can make off it and keep the business.

Basically don't let doctors tunnel vision and egos get in the way of truly finding out answers as you are the one living with it not them.

Hope that helps and doesnt sound hostile towards the doctor, but I personally feel he had no right trying to tell you to cancel your appointment which could have cost valuable time getting real treatment.