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Jersey Girl I too am having trouble with muscle weakness. I had an EMG last year and blood test to rule out Myasthenia Gravis. They both came back negative. The doctor is running the blood tests again as he said sometime in the early stages of a disease the tests don't show anything and then later on they do. I also feel like I drag my feet when I walk but it's not all the time. Last month my husband and I went to a concert and my husband had to almost carry me out. I had to walk a distance to get there and then after sitting for a long time I just couldn't get my legs to work. I had another MRI last month to rule out MS which it did. I have never had an MRI of my back or neck. Do you have muscle weakness in your arms also? Do you have pain in your back or just hip? Shari

I have been diagnosed with POTS but the doctors think there is something else going on that they can't identify yet. About 5 or 6 months ago I started having little muscle twitches all over. There would be just like one twitch on my arm and then later I would get one in my leg or back. Anyways, now some of them are getting stronger where they actually move my leg or arm. These twitches seem to happen when I am relaxing and occur more often when I am very fatigued. Just wondering if anyone else is experiencing this. Is there any relationship with POTS and MS or POTS and Parkinsons? Thanks Shari

1. Shari 2. 42 3. POTS-Graves 4. POTS-42(5 months ago) Graves(Hyperthyroid)-40(Thats when POTS symptoms started 5. Ohio 6. Extreme Fatigue, Weekness, Tachycardia, Shortness of Breath, Hands and Feet Tingle-Chest Pain, Neck Pain, Hoarseness-severity depends on level of fatigue, Swallowing Difficulty, Heavy Legs, Off balance (not so much dizzy-just drunk walk), Slow Moving, Excercise Intolerance, Joints crack all the time, Muscle Jerks, Burning and Pain in Right Foot, Drag Right Foot, Heat Intolerant, Chills, Cold and Clammy Hands and Feet, Constipation-Bloating, Brain Fog-Memory Loss-Hard to get the Words Out sometimes-Moody, Noise Sensitivity, Dry Mouth, Insomnia. 7. Fatigue, Slight Tachycardia, Hoarseness, Heat Intolerant, Constipation 8. Provigil, Mestinon 9. Synthroid-112mcg, Toprol-50mg, Cylert-75mg

Mindy, Do you see Dr. Lamancusa? I wondered if you were the same Mindy I talked to a month ago or so on the phone. Shari

Just wondering if this is normal. Just when I thought I was adapting, this week I crashed. Wednesday I spent the whole day in bed I was so fatigued. Didn't really sleep the whole time but felt like I couldn't move. My husband even had to help me bathe. Ugh! I hate this. I bawled and bawled. It is just so hard for me to admit that I can't do everything. But I am feeling better now. My friends said in the past few weeks they could tell in my eyes I was going down. Does everyone with POTS do this? I have no idea what trigered it. Did my body just have enough and it was time to rest?

You may want to have your thyroid checked also. When I had an overactive thyroid, my heart pounded all the time.

Dan, I was wondering how you found out you have nerve damage in your neck. I have had throat problems for 2 years since drinking radioactive iodine for Graves disease (overactive thyroid) That is when my symptoms all started. I have been hoarse constantly now for 9 months. My ENT doctor said there was nothing wrong by looking in my throat. I just needed to be on tranquilizers. I don't think so. I'm tired enough. What kind of test did you take? Shari

I don't live in Columbus, but my local neurologist referred me to Ohio State Univ. because he couldn't figure me out. I was diagnosed there by Dr. Kissel, professor of neurology. I have only seen him twice. Once for the initial visit and then once after my tilt table. He was very nice. Unfortunately at the time I had never heard of POTS and everything went over my head. He referred me back to my local neurologist whom has never heard of POTS either. He is trying though. Dr. Kissel is very hard to get in to see as he is very busy. The only reason I had an in is because my local neurologist had him in college. He had his home phone number.

I tried Provigil but it didn't really do anything for me. The doctor now has me on Cylert (Pemoline). It is normally used for children with ADHD, but in adults it works as a nervous system stimulant. I have noticed some improvement. I started out taking one 37.5mg in the morning. Now he has me on one in the morning and one in the afternoon. The first week was great, but now I feel tireder than before. Maybe I'm getting too much. I'm gonna try for a while and see how it goes. That is the only medication I am on except for my thyroid medication (Synthroid). Fatigue is my worse symptom.

I have just been diagnosed with POTS 3 months ago. Two years I was diagnosed with Graves disease (overactive thyroid) and received radioactive iodine to destroy my thyroid. Thats when the POTS symtoms came along. They were off and on till about 9 months ago and then they decided to stay. I can't help but think there is some link there. Hope to find out soon.