Not sure where to go from here... Help!

[dannilynn]

About 3 yrs. ago I started some strange symptoms. It started with a horrible itch all over my body and nothing would touch it. I tried special soaps, lotions, and Benadryl thinking my skin was dry or I had an allergy to something. The itch was so bad I couldn't sleep. It felt like I had bugs crawling all over me! I also was experiencing a cool sensation on the top of my head at this time, like someone was pouring cold water over my head. As the time passed I started dealing with strange pains. Some are electrical, some feel like a bee sting, needles jabbing me and some were just regular back, neck, shoulder, leg pain which I thought was just a sign of aging, but I was only 31 at the time. Then came the tremors! They were becoming debilitating! It would feel it coming on in my legs, then I would notice my hands would start to tremor, and before I knew it my head would be bobbing. I was working at the time and it became to much to handle. I worked for a local retailer and I was a cashier. It was hard to even get to work let alone standing there while the public looked at me like I was a whack job! I couldn't drive when the tremors would hit. If I were to be driving I would have to pull over, because my motor skills were horrible. During my tremors I can't speak at times and I stutter. I have swelling a lot as well.??? I can't wear my wedding band anymore. Not sure why. I have balance issues. I have had that for years. My husband says I'm clumsy. I drop everything. I have no grip anymore at all! During the time it all started I was going through other health issues. I was having heart palpitations, my thyroid has cyst and a goiter, but my levels were fine, my white blood count was up. I was sent to many specialist by my PCP. I was sent to a endocrinologist, and a cancer doctor. I had blood work, stress test, etc. Everything turned out fine. I was sent to a neurologist and every time I went the tremors were not onset so she looked at me like I was crazy. I never mentioned to her about the pains or the itching, because I didn't think it was anything to do with my situation. She did an eeg and nothing! Also had an MRI of the brain and nothing! She said that I had essential tremors. She prescribed me Neurontin and Inderal. They help some, but not totally. The Neurontin helps the itching tremendously! The tremors have lessened, but they come from time to time. Recently I had a 3 week period where I just had no control. I had a new PCP now and when showing up at the office the tremors were there and they were hard core. I had noticed that recently my face was going numb from time to time and some times I just felt out there! When the tremors are on set and I am having a bad week I will have an on and off facial numbness and pain. She told me she was afraid I had MS and wanted to get me help. She sent me for test (MRI) and referred me to a different Neurologist. MRI showed nothing again! It took me 2 months to see the neurologist and when I went they were dealing with a new computer system and I could hear down the hall as they were training him to use the system. I waited forever and of course I did not have tremors that day! He literally came in the room like he didn't want to be there. He was very unprofessional! He told me he didn't think there was anything seriously wrong with my brain and that I was just exhausted. Seriously? I wouldn't wish these symptoms on anyone. My memory sucks anymore! I forget everything! I was never like that. I'm always tired! I have a lot of dizziness and brain fog. I am tired of not getting any answers! I am tired of struggling! I just want a normal life! I don't know where to go from here. I'm not sure that I have MS, but I just wish I knew what was going on with my body. Can anyone understand any of this? Does it make any sense? What should I do?

[NHE]

Hi dannilynn,
Welcome to ThisIsMS. Have you ever been tested for nutrient deficiencies such as vitamin B12 or D3?

[want2bike]

I can understand what you are going through. My trip to the doctor after I had my double vision and fainting spells I was told it was just old age and I would have to learn to live with it. That was a lie. These jokers do not have a clue as to what is going on. If the doctor can find nothing after running the test then there is nothing. If they can't see it on an xray or blood test it doesn't exist and is just your imagination. You have toxins in your body which are making your sick. Whether you have MS or some other neurological problem is not important. The important thing is you get these toxins out of your body. This is done through the foods we eat. Dr. Bergman explains it in his video. Hippocrates told us "Let your food be your medicine and your medicine be your food". The same is true today. Your body can repair itself if you give it proper nutrition. Another issue to consider is amalgam fillings and root canals. These may present your body with more toxins than it can handle. That was my problem and I had to see a mercury free dentist to have it taken care of. Also drug are toxic to the body.

[lyndacarol]

About 3 yrs. ago I started some strange symptoms. It started with a horrible itch all over my body and nothing would touch it. I tried special soaps, lotions, and Benadryl thinking my skin was dry or I had an allergy to something. The itch was so bad I couldn't sleep. It felt like I had bugs crawling all over me! I also was experiencing a cool sensation on the top of my head at this time, like someone was pouring cold water over my head. As the time passed I started dealing with strange pains. Some are electrical, some feel like a bee sting, needles jabbing me and some were just regular back, neck, shoulder, leg pain which I thought was just a sign of aging, but I was only 31 at the time. Then came the tremors! They were becoming debilitating! It would feel it coming on in my legs, then I would notice my hands would start to tremor, and before I knew it my head would be bobbing. I was working at the time and it became to much to handle. I worked for a local retailer and I was a cashier. It was hard to even get to work let alone standing there while the public looked at me like I was a whack job! I couldn't drive when the tremors would hit. If I were to be driving I would have to pull over, because my motor skills were horrible. During my tremors I can't speak at times and I stutter. I have swelling a lot as well.??? I can't wear my wedding band anymore. Not sure why. I have balance issues. I have had that for years. My husband says I'm clumsy. I drop everything. I have no grip anymore at all! During the time it all started I was going through other health issues. I was having heart palpitations, my thyroid has cyst and a goiter, but my levels were fine, my white blood count was up. I was sent to many specialist by my PCP. I was sent to a endocrinologist, and a cancer doctor. I had blood work, stress test, etc. Everything turned out fine. I was sent to a neurologist and every time I went the tremors were not onset so she looked at me like I was crazy. I never mentioned to her about the pains or the itching, because I didn't think it was anything to do with my situation. She did an eeg and nothing! Also had an MRI of the brain and nothing! She said that I had essential tremors. She prescribed me Neurontin and Inderal. They help some, but not totally. The Neurontin helps the itching tremendously! The tremors have lessened, but they come from time to time. Recently I had a 3 week period where I just had no control. I had a new PCP now and when showing up at the office the tremors were there and they were hard core. I had noticed that recently my face was going numb from time to time and some times I just felt out there! When the tremors are on set and I am having a bad week I will have an on and off facial numbness and pain. She told me she was afraid I had MS and wanted to get me help. She sent me for test (MRI) and referred me to a different Neurologist. MRI showed nothing again! It took me 2 months to see the neurologist and when I went they were dealing with a new computer system and I could hear down the hall as they were training him to use the system. I waited forever and of course I did not have tremors that day! He literally came in the room like he didn't want to be there. He was very unprofessional! He told me he didn't think there was anything seriously wrong with my brain and that I was just exhausted. Seriously? I wouldn't wish these symptoms on anyone. My memory sucks anymore! I forget everything! I was never like that. I'm always tired! I have a lot of dizziness and brain fog. I am tired of not getting any answers! I am tired of struggling! I just want a normal life! I don't know where to go from here. I'm not sure that I have MS, but I just wish I knew what was going on with my body. Can anyone understand any of this? Does it make any sense? What should I do?

Welcome to ThisIsMS, dannilynn. We understand your frustration; we don't have the answers; we can only share our experiences and opinions to answer your last question, "What should I do?". Start again with your PCP or a doctor that you trust and respect; discuss your written list of ALL symptoms (I always forget something if I don't have it written down!); if your PCP prefers to refer you to a specialist, I think a hematologist would be appropriate.

Your symptoms are common to many conditions. MS is a diagnosis of exclusion. The other likely conditions must be ruled out first. The University of Chicago offers the following guidelines for the investigation:

http://peripheralneuropathycenter.uchic ... #bloodtest\

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

Ask for and keep your own copies of any test results.

Please note that the first blood test the U of Chicago suggests is for vitamin B12. Taking vitamin B supplements before testing will skew the results. There have been several malpractice cases won (for several million dollars each!) when doctors did not look for vitamin B 12 deficiencies and patients went on to develop irreversible neurologic damage.

In my opinion, your symptoms ("bugs crawling all over," paresthesias/"unusual sensations", pain, tremors, swelling a.k.a. edema, balance issues, clumsiness, "no grip"/muscle weakness, heart palpitations, numbness, memory loss/forgetfulness, fatigue, dizziness, brain fog) are consistent with a B12 deficiency. You say you have had blood work – I wonder if this included thorough testing for a possible B12 deficiency – this requires more than just a serum B12 test alone.

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Dr. Jeffrey J. Stuart, D.O. (This may be available at your library.). http://b12awareness.org/could-it-be-b12 ... diagnoses/ These authors suggest that the B12 level should be at 1000 pg/mL or more if a patient presents with neurologic symptoms. Be aware that a B12 deficiency can develop in any person at any age.

I think this is definitely the place to start. You have a problem; this is not just exhaustion! Now, the task before you is to find a doctor who enjoys being a "disease-detective" and begin your investigation again. I wish you all the best.

[rhs1040]

Your symptoms seem quite a bit like mine, except that I haven't experienced skin itchiness or tremors and I *did* have lesions show on my brain MRI. The dizziness, facial numbness, feelings of fogginess, etc. ring true with me. Lots of additional things I've felt randomly, like limb weakness, pins-and-needles in my arm, grip strength, etc...but aren't sure if they are just my normal idiosyncrasies that I wouldn't give a second thought to if I wasn't on alert being consumed by body awareness.

Unfortunately, I am still in the midst of my testing/waiting for diagnosis period, so I don't have anything to offer as far as advice or tips. Just wanted to let you know that someone else is experiencing similar things out there and feeling just as lost and confused! My personal worst fear is that there will be nothing conclusive found, and then I go from being a sympathetic figure at work (i.e. Oh, he's going through a lot) to being seen as a malingerer trying to get attention and special accommodations for a phantom illness. Hoping for a better outcome for us both!

[lyndacarol]

I am currently experiencing edema (swelling); I cannot wear my wedding band anymore either due to the swelling. I have annoying dry skin and itching, even the "bugs crawling" sensation at times, which I now suspect are all related to the edema.

Dannilynn, I wonder if your swelling was also occurring at the time of the "horrible itch." The two symptoms could be related for you, too.

[dannilynn]

Thank you all for your input! I am currently looking for a new PCP. I have one in mind. He actually takes the time to listen and cares for his patients. I will def. check to see if they have done testing to see if I have a B12 deficiency. I do have Vitamin D deficiency. I am hoping this new PCP can do a complete work up. I would also like to have a never test done as well. It weird that when I take the Neurontin the itching goes away.
rsh1040 I wish you the best and I hope you get the care you need and the proper diagnosis.
lyndacarol I itch everyday. The swelling comes and goes.
I will do anything to help feel better. I can deal with the pain for now. I think the worst for me is the tremors. It's scary for me. I have no control. I don't feel myself most days and will be doing my best to get the treatment I need. I will keep you all updated once I find out more.

[lyndacarol]

I will keep you all updated once I find out more.

Please do. Your new friends here wish you the best.

[AdiosMS]

"Pouring cold water over the top of my head." When I had a full-blown MS attack (went numb on one whole side of my body, couldn't walk), it was preceded by a feeling that someone poured water (not necessarily cold) over the top of my head, then I went numb. I was diagnosed via MRI w/MS, MS lesions, etc. Recently, a felt that feeling again, but I was falling asleep, and when I woke up, I was fine.