[hurtsobad73]

Hello to all,

I am new to this site. I am a member of BrainTalk and have posted there, but to no avail. Hopefully some people here can help, since my problems are neuro related.

It all started after I had a complete hysterectomy in 2003. My body just seemed to go in a complete frenzy. I know they say that after a hysterectomy it takes a while for you to recover. But this was different.

I had always had frequent migraines as a teenager, but since 2003 those migraines became more frequent and then I began having daily headaches. My body became completely fatigued. I mean I began sleeping 15-20hrs daily. This was way after my surgery recovery time. Up to a year after. I started having floaters in my right eye and I would get a pain above the right eye that would just kill me. My head would go numb, my left side would go numb. I would get tingles in my fingers and toes on both side of my body. My body would sting...like bee stings. It hurts to were clothes some time. It hurts to take a shower. The water beating on me hurts. Temperature is very confusing. Sometimes cold hurts, sometimes hot hurts. So lukewarm is usually were I keep it. Then in 2005, I started having seizures. My father has a history of seizures. His started when he was 36. However, he had a brain injury at the age of 18, so they assumed it was from that. Now they are second thinking that because of where the seizures are coming from. He is having approximately up to 20 seizures a night at times. He is scheduled for 4 brain surgeries starting Feb. 14. My first seizure was when I was 31. Could there be a connection? I think so. I think genetics play a big part. But my neuro won't listen. BTW, this is my third neuro, the other two say that my seizures are NES, they feel that they are pyschosomatic.

I have been dx with Depression, CFS, Fibromyalgia, RLS, PLMD, NES, Migraines, Lordosis, Congenital Spondylolisthesis, Chronic Sinusitis.

All MRI's and CT's have been normal other than ones done for sinusitis. They state that my frontal and maxillary sinuses are full and I need sinus surgery. I had sinus surgery done in 2000, but only for the maxillary sinus' so the ENT feels that it is necessary that I do both frontal and maxillary now. (ouch)

I have had temporarily paralysis twice. I was fully aware and conscience of what was going on around me, but could not move an inch. The first time it happened I was awakened at night, and could see the alarm clock, but could not move. I even tried to get a sound or whimper, but couldn't. So I watched the clock for an hour and 4 minutes until I was able to move again. It scared the crap out of me. Than was in Sept 2005. Then again in Nov (on Thanksgiving)2005 I lost movement of the bottom half of my body. I couldn't move my legs or anything. That lasted all day. We called the neuro on call and he felt that because I was also sick at the time, that it was just a virus. No big deal. I felt it was a big deal. Since then, it hasn't happened while conscience.

I have both partial and GM seizures. My dad has been dx with ES. He doesn't have a tumor or anything, but because he has had so many seizures in the last twenty years, he has major scar tissue that needs removed.

I did have an EEG done back in 2004, it too was normal. I also had an LP done in 04 that was normal. My first neuro dx me as "probable MS". I am not sure if that dx still stands with my new neuro.

I have been referred to an Epilepsy clinic at Duke in NC (where I live), but can't get in until May 1. My seizures are averaging about one or two every other week. My primary care dr. is great. He has checked all my hormone levels and other levels he could think of.

Currently I am taking Multivitamin, B-12, B-6, B-2, Complex B, Vitamin D, Vitamin E, DHA (Omega 3 -Fish Oils Purest Form), Pedolux (Butterburr Root Extract for Migraines), Folic Acid - All taken in the morning

In the evening I take Topamax, Seroquil, Diazepam, Verapamil (for daily headaches.

I know this is a lot to read and take on. I guess my questions are...has any one experienced any of these symptoms? Does anyone of any suggestions one what I should present to my neuro? Could my migraines be causing the seizures? Do you think my seizures are ES or NES? What does the FM/CFS, if anything, have to do with all of this? Giving your opinion, ideas and suggestions would be much appreciated, regardless of the harshness that they might be. There hasn't been anything out there that I haven't heard from the doctors. However, keep this in mind. In the latest Fitness magazine, it has been shown through a study that 1 out of every 4 women are misdiagnosed who have an autoimmune disease because doctors report them as chronic complainers. Not saying that I have an autoimmune disease, but saying that my neuro puts me off as a chronic complainer when my symptoms are very real. Sorry, just had to get that off my chest.

Thanks again in advance for any help...

M

[Jomar]

[I started having floaters in my right eye and I would get a pain above the right eye that would just kill me. My head would go numb, my left side would go numb. I would get tingles in my fingers and toes on both side of my body. My body would sting...like bee stings. It hurts to were clothes some time. It hurts to take a shower. The water beating on me hurts. Temperature is very confusing. Sometimes cold hurts, sometimes hot hurts. So lukewarm is usually were I keep it.]

Hello and welcome to Neurotalk,
the part I quoted above from your post made me think of RSD/CRPS {can go be either name}
We have a RSD forum here if you would like to find out more about it.

Have you ever considered getting an evaluation by an expert chiropractor?
some links-
Chiropractic care info- a good one can help with many symptoms:
http://www.upcspine.com/self.htm
http://www.uppercervical.org/subpag...b/about_faq.php
http://www.spineuniverse.com/index.html
http://www.coloradochiropractic.org/.../glossary.html

[hurtsobad73]

Thank you for your insight. I went and read a little about RSD. I found a lot of information that fits my symptoms, but then some that don't. But if there is one thing that I have learned that is no everyone has every symptom.

My skin often changes colors. Red to redish purple to blueish purple. I sweat at night (which I often attribute to hot flashes from the hysterectomy I had 4 years ago), but then I freeze and need an electric blanket, then get hot. Showers are terrible as I had stated. Baths not much better.

I had many injuries growing up as a child. But this all started after I had my hysterectomy in June of 04. One thing comes to mind with that. After that, I had a problem urinating. My gyn told me that he may have "bothered" a nerve while doing the procedure, but that it would get better in time. I still have a small problem at times urinating, but not like it was in the beginning. I don't have any swelling or redness at this site, nor at any other injury site that I can think of. I do have two large "water pockets" my doctor calls them at injury sites. They don't hurt. They are just full of water. They are at my right knee which I broke at age 9 and at my waist line above my belly button, not an injury site. Not sure why it stores up there, but the doctor says that it isn't dangerous and there is no reason to drain them. Any thing you can think of here? Could this be a symptom of RSD? I guess I should be posting on that site as well.

Any help would be appreciated and thank you for responding.

M

[Jomar]

Yes and it does sound like you may have a couple of conditions.
Sometimes you need to keep trying new doctors till you find one that will believe and help.
Multiple diagnosis are difficult sometimes.
Don't give up.

[tangye5]

I keep posting since I joined yesterday and truely amazed at the number of patients out there with the same symptoms I suffered since 1989. Migrains, brain fog, floaters so bad in right eye that vision became impaired, CFS, Chronic pain that moved to all points of my body and head at different times. I am a registered nurse and knew that something was drastically wrong. So many doctors and multiple MRI's of spine, shoulder, leg, foot. In 1989 my husband removed an engorged tick from back of head. I took it to an Army Lab in Texas to be told that, " one good thing they did not have Lyme Disease in Texas." Within days I was hospitalized with meningitis. When I left the hospital a week later I was so fatigued that I could barely walk to bathroom and back to bed. This went on forever. I went back to the doctors again and again and had tests and more tests. Nothing would show up except abundance of neutrophils. I finally asked for a referal to psch. to check to see if maybe I had depression because of the horrible fatigue that made me stop training for my running and tennis team. After 15 minutes with the doctor, he assured me that I was not depressed, but he felt I had a syndrome or undiagnosed disease. I went on to be tested for Lupus, rheumatoid arthritis, anemia, etc. I did have a fast degenerating osteoarthritis from xrays that the doctor compared of shoulder, thumbjoint, and whole spinal series. One doctor told me that two xrays of same cervical spine a year apart looked like a ten year degeneration, and it was ''ODD". I had to stop working as an OB RN because of the fatigue and I felt badly becaused I enjoy my work. I decided that I would make myself go to the gym after a year of this CFS. I went every day of the work week and Nordic Tracked 4 miles Monday-Friday. After these workouts I would shower and then sleep. I was so proud that I did this and nothing short of surgery would keep me from this so I could keep my sanity. From August of 1989 to August of 1999 I had two shoulder surgeries, three foot surgeries (for tumors), Knee drain, abalation of tongue and reduction of nasal turbinates for severe sleep apnea, removal of cystic ovary, three excisional breast biopsies, treatment for dizzy spells that came on with a vengence and would disappear as fast as they came, Chronic kidney infections, malaria symptoms but no malaria. Finally ten years to the month I had a ruptured brain artery which had to be repaired and spent two weeks in ICU. Lucky to still be here. The interesting part of this history is that when I had the brain artery rupture the hospital staff was filling my body with IV antibiotics and after this episode I felt better than I had since 1989. About a month into rehab to learn to walk and talk again, my daughter called from her dental school and said that day they had discussed a patient that had all my symptoms and surgeries except the removal of an ovary because this patient was a man. She said "Mom sit down because I thought they were talking about YOU! The man had finally been diagnosed with Lyme disease. She said I needed to be tested with a Lyme Specialist because this disease imitates so many other conditions. I can't tell you how fast I got those tests ordered. The first was a negative but the Western Blot was high positive. The doctor asked if I had ever noticed a relief of my symptoms and I told him that most times when I was on antibiotics for sinus infections and kidney infections I did notice a slight change for the better. Also that since the two week stay in ICU for the brain repair that I actually felt great compared to how I felt before this disaster happened. To make this short. I was placed on two weeks of IV Rocephin and felt great. The floaters disappeared from my eye, Fatigue was dismissed. We were shortly after this incident sent back to Texas to the same Post where I had been told they do not have Lyme Disease, and about 8 months after my arrival the symptoms came back with a vengence. Saw infectious disease doctor and he said to live with it. "The two weeks of IV therapy I had had 8 months prior would have killed the disease." Now I was depressed. Thank The Heavens Above this tour was only two years and back to Colorado Springs so my husband could retire and I could get help. This time I started having trouble breathing and saw a pulmonary doctor and he was amazed I was breathing at all because my oxygen saturations were in the high 70's. Normal is 92-98%. I had cat scans of lungs and they could not find a thing. I did not have asthma. I told him about my Lyme and he said BINGO. He sent me to a docto that had been diagnosed himself with ALS and wheelchair bound to find out that he had Lyme. He was treated with 6 months of IV therapy by a doctor from Texas (where they don't have Lyme Disease). He ordered new blood tests and mine were sent to the IGeneX Lab in California and we got the answer. I had two types of Lyme and two types of a parasite called Babesia Microti and Babesia WA1 - which was indeed causing malaria. I have traveled a long road to get where I am and am so amazed at the number of people with the symptoms that are described and their doctors never have them properly tested. This disease is in pandemic proportions and we poor folks go from doctor to doctor and never get the right diagnosis or treatment. Because I now have cystic LYME (the spirochette protects itself by forming a cyst around itself and when the time is right the cysts open and more spirochette flow though blood) I am on IV therapy with three different antibiotics and am out of the wheelchair and off the oxygen and feeling I have me back. Please get to a specialist in Lyme. Warmly, pam482@hotmail.com tangye5

[hurtsobad73]

and it is "negative". Now this is my rheumy who had given this test to me (about 3 years ago). Should I demand another one? One thing that you said that rang true for me is the treatment with antibiotics. I have been on antibiotics for the last 17 days due to a major sinus infection. I have Chronic Sinusitis and they had to piggy back my prescription for my antibiotics because the infection is so bad. This last week I have felt good to some extent. I have been depressed but do to the fact that my father had brain surgery last Wednesday and my son came down with a major virus and I wasn't able to go to WV to be with my dad. So that in itself caused me to be depressed, but take that out of the equation and I feel better than I would if I weren't on the antibiotics. However, I am not very familiar with Lyme. Once the test came back negative, I just disregarded it. Now I need to take a better look at it.

Thank you for your information. I appreciate it. I need all the help I can get.

M