Where do I begin?.. My question 'Is it in my head or is it real' is one borne out of frustration and a comment given to me by a 'second opinion' Neurologist last week. Prior to this problem I led a full life - working, going to the gym twice a week, gardening and living life to the full. Before I got sick, my mantra was 'there's 24 hours in the day - it's there for living'. I see every day as being there for a reason and to do as much as possible however this has now changed.

Last June (08) I attended a function. During the middle of the night, the top of my body was burning up, my legs and feet were frozen. The following day I couldn't raise my head, arms, legs and thought it was the flu. The next day my muscles ached and I had a headache - again I stayed in bed. The following day it had all gone however I had an infected throat and diahorrea with a temperature until 2.30 when it stopped. I went back to work the following day and although I felt weak I put it down to the strange virus I had. My legs were weak and I had pins and needles in both my feet and hands. Three times my legs gave out so I went home; on my way home they fell away from me again and I went to the Doctor who suspected I had Guilliane Barre. Having spent two weeks in hospital having chest, MRI, Lumber and numerous blood tests followed by EMG tests they concluded that I had low Folic Acid and Vitamin E levels and although my lumber test proved I had protein in it I was sent home.
I was given physiotherapy as they were still unsure whether I had GB or not however the Hydrotherapy made me worse; I couldn't get out of the pool and dressing myself was non-existent and afterwards I spent the day and the following day asleep!

Since this has happened I have had more EMG tests, blood tests and have had a second opinion; this took five months to get but it is England! It appears after one nerve conduction test, the Dr who was testing me confirmed that they were testing me for MS/MN/Myaesthenia Graves and Chronic Fatigue but so far they had found nothing. I can walk approx. 300 yards and then my left leg drags. My hands and arms are nearly back to normal however it is difficult opening up jars etc. I wont drive for fear of not being able to stop the car. I still have the pins and needles in my feet but this is getting less. Any exercise I do whether it be going for a walk or doing the cooking ends up with me having to rest for two hours or so; I am completely fatigued that I have to rest. I have bouts of being extremely angry and upset which is obviously frustration at not being able to do anything.

So going back to my original question - Is it in my head or is it real? The Neurologist said my symptons are consistent with MS although the blood tests don't prove it and I am not to under estimate the power of the mind. He is sending me to see a Neuropsychologist and to eliminate the MS, I am having another MRI and had another blood test.

I apologise for not being positive and upbeat - I'm feeling a trite sorry for myself having not worked for eight months as a result and needed to vent my spleen

It may be in your brain but it obviously is not psychological. It is not "in your head." Your symptoms are REAL.

I do hope you find relief soon.

Can you get a second opinion?

Where we live a local magazine sends out thousands of questionaires to medical professionals as to which doctors in their profession are the "Top Docs". I have switched doctors several times until I found one that could figure out my problems. And no, I am not looking for a doctor who will be a "Yes Man" -- I wanted to know if it was in my head or was I really sick.

Specific problem: Pulse Ox. My oxygen levels were above 90 in virtually every doctors visit.
I told them of my symptoms and each Pulmonologist shook his/her head and said there was nothing to support my observations. I bought my own pulse ox machine and started writing down the numbers, getting my wife to verify them. After doing this for about 6 weeks my pulmonologist sent me to the National Jewish Hospital in Denver, CO. My week of testing turned into almost 6 weeks and they found a tear in my heart, allowing the oxygen desat blood to take a shortcut through the Atrials, mixing with oxygen rich blood. Since the implant in my heart my breathing and oxygen levels have improved to the point I am consistently in the 95+ range.

Obvious Moral to the story: I did not accept the doctor's answer and took action myself.
NOW ... NOW when I say something is wrong, all my doctors listen and seem to go the extra step. Don't give up on yourself. Keep fighting, after all, YOU live in that body.
Good Luck...

ABH356 I sent you a PM

I just joined this site and read your listing. Your symptoms are very similar to mine, but I did not have the illness. My symptoms come on slowly. However, I have searched for 2 years for a diagnosis. I am a nurse. 32 years in nursing and I am very angry at the so-called specialists. Keep on trying and keep your head up. It is not in your head! Maybe we will both find some answers. All we want is some help! Maybe there is something that can make us at least feel better!
Cathy C

Angela,
I have been having neuro problems, many similar to what you are experiencing for 14 years! I had three bad bouts - 1996-1997, 2003-2004, and now which started 1/29/09.

MS has been suspected on me during each of these, but they have never nailed it down. I will be having more MRI's soon to look for lesions again.

There are many, many neuro conditions that have similar symptoms, and unfortunately, I can't think of one that is diagnosed (dx'd) with one single test. I was dx'd with Myasthenia in 2004, but the other set of symptoms I suffer that are not MG are the elusive ones.

I have discovered through the forums here that certain things affect test outcomes. Smoking within 24 hours of an EMG can cause inaccurate normal readings (for MG at least) - same for coffee and chocolate for 3 hrs prior to the tests. The docs don't mention that to you, and I even asked my neuro prior to my last EMG. She SAID it doesn't apply to tests on peripheral nerves, but I find it very strange that the only EMG that showed abnormal for MG (of several that I have had) is the one where I was hospitalized and unable to smoke for more than a day, and I hadn't had my coffee prior to the early morning test!

Because my neuro wants me off Prednisone due to it's anti-inflammatory properties prior to this MRI, I'm now wondering if the fact that I had been taking 1000mgs a day of a non-steroidal anti-inflammatory prior to every other MRI they've done affected those results as well! I haven't found any info at all on that yet.

I don't know if you're thinking that being sent to a Neurophyschologist means your doc thinks it's in your head, but it doesn't! Neurophysch's do alot of testing to help determine directions the neuro should go in. They look at more than just neuro items - when I went to one she explained that she needed to have my heart tests, my sleep apnea - basically everything that had been done to me. That information, along with the discussions and cognitive thinking tests gives them an overall picture. I think they may be the top of the line docs since they have knowlege of ALL systems. They then recommend other tests that should be done, alternative diagnosis, etc. It just means that your neuro knows there's something there but they need another set of eyes and experience on it.

Good luck with your appointment. Don't forget about the pretesting precautions, and please realize that everyone of us that goes through this neuro nightmare feels the same way at some point! Don't apologize for venting your frustration. That's part of what the forums are for.

I also started losing the use of my left leg. My doctor's first MRI was also for MS, which was negative. Then I had MRI's on my back and spine- negative. I then went to a local neurologist and had an EMG, still nothing. After quite a few visits and almost 2 years after the onset I was referred to a neurologist who specializes in dystonia. That's what it is.
I get botox injections to relieve some of the muscle movement. It doesn't go away completely but helps somewhat. However this has affected every area of my life. I also developed drop foot and wear a brace.
The issue is that not too many doctor's even know what dystonia is so they can't diagnoze it. I was really lucky to get this doctor, he's great!

Hello--hope you don't mind but I have a few questions. I was also diagnosed with cervical dystonia and vocal cord dysphonia. I had my first Botox treatment in April and my second about 4 weeks ago. My first treatment took 3 1/2 weeks before it kicked in and started to wear off quickly. This time it didn't take much away?? Do you think that it won't work for me?? How long ago did you start your Botox? Did it work the first time? Any info will be greatly appreciated---hutch

I had the pins and needles in my feet and terrible weakness years ago ,when I was exposed to chemical toxins (Tester's model airplane paint, and turpintine) I was making dough ornaments to sell & painting them, I got to where I couldn't even brush my hair and hardly climb steps. The doctor sent me for a test for myasthemia gravis . When this was going on....about all I could do was just sit....so I spent more time painting! (not knowing this was the cause) When Christmas came that year, I put the paints away and after a few days started to recover from "whatever" had caused my problems. We were all happy. Well August came and my husband said that people were asking if I would make the Christmas ornaments again. I agreed to do it. The very first day the paints came out and the terpintine...POW , it hit me so hard that I sunk to the garage floor..my body went right back into the same symptoms, but worse! Then , we knew what had caused it all. I was so chemically sensitive for years that I couldn't be anywhere near anyone with perfume, or go down the laundry isle of a grocery store (my lungs would tighten and head would hurt so quick that I could hardly drive home.
I am still sensitive to strong chemicals and between them & pesticides from farming, feel that they brought on PD symptoms much earlier in life than I would have had them. I am now 57. With addition of fava tincture daily, I feel good and am mostly symptom free at this point...but how I wish I had not had the expossure to toxic chemicals!