Neurological Symptoms, Desperate now

[SickbutEmpowered]

I am 31 and disabled. I have suffered since I was 13 from joint pain and fatigue. Rheumatological tests have been done and I have had borderline test results and elevated Sed rates usually 50 and the highest at 80. I have had had high CRP levels and a few Prothrombin Tests abnormal. But, that route I feel has been of no help because I had no diagnosis. I was diagnosed with humoral immune deficiency and active EBV in 2005 if I remember the year correctly. They also said I had chronic fatigue syndrome. After nine months of IVIG at least I was not getting infections frequently and it also helped with the joint pain and weakness I had suffered.In summer of 2006 I started suffering from dizziness, seizure like incidens and falling episodes which messed my back up worse than it was. I could not even walk due to the pain and weakness. We lost our house and had to move out of state to live with family. The IVIG was for short term help to see how I would do, and for about a year I had hardly no infections but now I have been getting them again. But it helped for numbness, weakness, and  pain I had in my arms and legs for years and I do not know why. About two years ago, I started having horrible cramping in my legs (which I had on and off in the past), I also had spasms in my arms and tremoring. Most of the tremoring is limited to my left hand. I have suffered from fasciculations in upper and lower limbs including muscle weakness. It all pretty much got really bad all at once. I also started having double vision at this time. I was just diagnosed with mild strabismus in my right eye. I deal with eye twiching, headaches, and feel so weak. I have had trouble swallowing on occasion, and am fed up with life to be honest. I have had neurological tests and I was told I have signs of carpal tunnel (mild) and mild right inner ear weakness. I was just told to stay away from salt and fluids. I am having a hard time trying to get the help I need because I need to know what to do next now. I had to get a new internist because my family doctor was not doing anything to help. My brain MRI is as clean as a whistle. My eegs were fine. But, things have been getting worse. Where I am at, the medical care is limited. I am too tired and weak to keep doing this anymore. Honestly, it is hard to care even. I am sorry this is long, but I just want some direction. I do no expect diagnosis even from doctors here, I just want help and some respect. My concern is that this is not neurological, but all the symptoms point that way. There are days I tremor so bad, or have spasms that I cannot do normal things. I need help sometimes with basic care. My thyroid is very slightly low. Practically, it is just borderline. I have hypertension that goes up and down despite 8 years of being on medication. As a child, I also had instances of having elevated Blood pressure. I know for a fact that on about three occasions in the past (about three years ago and prior) my electrolytes were off including magnesium and potassium. In 2000 my vitamin D level was abnormally high, and the doctor told me to stop taking supplements. I didn't take vitamins at that time. I was also put on triamterine/hctz because of problems with potassium being low on those occasions this was over two years ago. But now I am on Lopressor, and for the last two years I have not been on any diuretics. However, I am borderline diabetic. I take metformin. But I have been using the bathroom some days 20-25 times. Last Friday in the morning my husband had to help me dress and I had to get Powerade because I was so weak.  I have been waking up 2-3 times some nights to have to use the bathroom. When I wake up, my mouth tastes salty like baking soda and some nights I have been sweating and the room smells briney. I am sorry this is so much, but I really need to know what kind of doctor can help me. Can electrolyte problems cause all this? When I tried to talk to my ex primary doc about this he yelled at me. But, I decided to try to help myself before I end up dead. My heart sometimes flutters or feels like it skips a beat when this is going on. I want my life back. I want to be able to have a family. For one week, I have had to even stop my bp meds at times because I was losing so much fluid. I have had to cut back on fluids as well due to pitting edema in my legs (though it was very mild). I am taking Potassium and Magnesium now  and it helps a lot, but I cannot seem to even keep enough in my system. I did this on my own with some research on electrolyte problems. From my understanding, many of the things happening with me can be caused by it. I have bad restlessness in my legs and arms. When I take more than the recommended dose on the bottle of magnesium these crawling and twitching problems go away. So what do I do? Where do I go? I need help and I have tried so hard. But when does life stop being worth living when no one will help or listen. So, I am hanging onto wanting to get better, but please will someone at least give me direction on where to go (what kind of doctor should I see). The quality of care here is poor and I am running on empty. God bless anyone that even tries to give me even a word of kindness. Peace

[SickbutEmpowered]

Thank you also for your help. I will have to look into getting checked I am so afraid they won't bother though. I have to find out if my thyroid is any lower than what it was the last time, because this new doctor is putting me on a different dose than the one my ex pcp put me on (even though I did not start taking it yet).
I am afraid perhaps I am starting to exhibit more autoimmune problems to be honest if my thyroid is just now on the putz, I seem to have (Meniere's), even though the doctor just gave me a generic term for what was going on-, and with all the neuro stuff ...I have to wonder. I need to go to the rheumatologist, but I the one my ex doc sent me too was not who I wanted to see. I am going to go to the one that treats my mom and sister. However, getting checked for Lyme this late on after being bitten by ticks in the 90s, I am not sure what they will do. I know my brain scan is clean as a whistle.
Thanks again

[bigdxxx]

i have some of the symptoms you have for 8 years now.i was bed ridden for 4  years due to pain,no one should have to suffer like this.im still in the pain, i have just forced myself out of bed on the couch.i never go anywhere except the store or doctor, because im short of breathe.in addition to muscle and joint pain, headaches, memory problems, all the organs in my abdomen are in unbearable pain, they throb 2 or 3 at a time. i refuse to take antidepressives,nerve medicine,and other medicines that can cause serious problems as well as strokes and heart attacks as a person said above.
      i think i might have cronic lymes, it can gets in all your tissues and organs- lungs,brain,muscles,joints,and all other organs crippling you. you can get treated by long term antibiotics. look for llmd doctor or a infectous disease.

[SickbutEmpowered]

Thank you Peachsurprize. I appreciate your perspective too. I actually (bad me) have taken myself off some medicine for now lol. I take neurontin because I cannot walk unless I am on it unfortunately, but I have really thought about Holistic healthcare and think it is interesting you mentioned it. You might laugh, but I was even looking into schools that have this area of teaching because I really want to get better so I can do something with my life. That is why I had to start taking magnesium and  just a normal daily supplement of potassium on my own (with no instruction) because without it I get pretty sick. I wish my insurance covered holistic Healthcare but it does not. I believe in eclectic approaches to all illness. I am not on any medicine by the way for pain or fatigue. I used to be. I stay fatigued regardless because I have chronic EBV. I do have borderline diabetes as well so this does not help.My stupid bp med I believe is causing more havoc than good. So I have backed off a bit with that as well.  Do you see a naturopath? I believe there is a place for all types of healing practice. I have respect for many doctors of different areas of medicine. But, I am sick of pills. However, IVIG was the best treatment I ever had and do need to get back on it. It is Immuno-globulin therapy, and without it many people would die. It at least kept me from getting pneumonia and such. Well thank you for your post, I appreciate it.

[peachsurprize]

Listen, you may not know this, but long term use of drugs can cause toxicity in your system and may in fact be making your symptoms worse. I cant tell you what is best for you, but you may try getting a new Dr and fresh perspective on  your pain, and then try HOLISTIC treatments with a practioner who is trained in holistic care, There are other ways to combat pain and fatigue besides drugs, you may find if you wean yourself off your long term medications you may feel better. go to the pharmacy and ask for a copy of the contraindications or SIDE EFFECTS OF YOUR DRUG.. Read it thoroughly.. maybe your drug is the culprit and some changes are in order.

[patsy10]

I have done a lot of reading on this. From what I have read, tests can be negative even if lyme disease is present.  My neighbor had a CDC positive test. If you read the lyme forum here, someone posted that they were bedridden and all of their lyme tests had been negative.  Then they found it in the spinal fluid.  MRI's can be normal or can show lesions that look like MS lesions.

[SickbutEmpowered]

If is funny you mention this. I was not checked for lyme disease. But does that have to show up on a brain MRI. I by the way have been bitten by a tick twice. I don't remember having a rash, but I used to have goats and we lived also in a heavily tick infested area. We had dogs too and I always was having to take care of getting ticks off our dogs where I lived. I had something on the back of my head and neck this happened twice. I thought it was just dirt or something, and when I scratched at it was a tick. I have the hebee jeebies just thinking about this. I don't know what to do though. I also know that Lyme tests don't have to show up in bloodwork isn't that true? I don't know who to go to to get checked for this, since it has not been mentioned.Thank you by the way. :)
HUGS

[patsy10]

I'm very sorry for your illness.  It sounds horrible!  It sounds a lot like chronic lyme disease.  A negative test does NOT rule it out.  It's important to see a doctor who specializes in lyme for an accurate assessment to rule it in or out.  I don't know if you have this but many people go for years on end with these horrible symptoms only to find out later it was lyme all along.  You may want to research this.