Distressed and seeking advice
Posted: Sat May 09, 2015 9:38 pm
Hi, I am hoping to have some advice/opinions from people who have some knowledge. For 6 years now I have been made to feel like a hypochondriac, I am continuously told I'm depressed/anxious or dismissed as being dramatic. I just really would do anything for some answers. As I have moved around the world in the past few years, it has been hard to get a Dr who takes me seriously but finally I have found one and have been referred to a Neurologist and for periphery nerve studies but they are unable to give me an appointment for 6 weeks and as I am waiting this episode seems to be lasting longer and more severe than others in the past.
My story is that for 6 years, roughly 12/18/24 months apart, I have periods of extreme tiredness, numbness/tingling, deep emotional upset, aches and pains and headaches. Like some of the flu symptoms without the flu. The first time it happened was a couple of months after my second child was born. I began to have strange tingling sensations in my fingers, knuckles and wrists. The Dr wasn't very helpful, asked a few questions about arthritis, ruled it out and told me it was nothing. I was very tired at the time but put it down to being a new mother again.
The second time it happened was a year or so later. I was having continuous headaches, they were severe but not migraines. They were present 24 hours constantly. When I woke up until I went to bed. One day I woke up and I had no headache, it was like silence in my head. No fuzziness and for the first time in weeks I could think clearly, no brain fog and I started crying with relief. The Dr said they were caused by stress. I also had the tingling but this time my right arm was tingling and going pins and needles too, as was my scalp. I thought had head lice, so determined was I that I made everyone in my family keep checking as i thought lice were crawling along my head. Then i realised it was pins and needles. The Dr wouldnt take me seriously and eventually it passed.
The third episode was when my son was 3. The headaches came back with vengeance. Both my arms/scalp/fingers and now toes were feeling numb and tingling with pins and needles. When I say numb, I can still feel sensation, it is like when have been laying on your arm and it goes asleep. The way I describe it is numbness followed by a rush of warmth followed by pins and needles, it is like a cycle of these sensations. This time I was feeling dizzy and disorientated. The brain fog was making it hard to function and communicate properly. I was spending days in bed and unable to follow conversations. I went to Dr and this time my bloods showed low b12 levels so they gave me the serum injections, three over 10 days and told me to come back every 3 months. I have never needed a b12 injection again. A few weeks later it passed and I was back to normal.
The 4th episode came roughly the same time as my mum was diagnosed with Coeliac. I was in a bad way and went to the Dr and asked if Coeliac could be the cause of my symptoms as I had heard it was hereditary and when i was helping my mum to come to terms with her diagnosis we came across symptoms which were similar to mine. H was rude and told me no as I didn't have the history of bowel problems that my mum had and that my problem was depression and anxiety, and tried to prescribe anti depressants. We had a huge argument where he finally agreed to take some blood and check for anti bodies for coeliac. The bloods came back negative. He again told me I was depressed. I just didn't understand. I didn't feel depressed. I didn't think I was depressed or anxious??? I didn't understand why these symptoms would come and go. I refused the anti depressants and waited for the symptoms to go again.
Now, at the present time. I have had the worst episode to date I am on Week 3 of barely functioning. The tiredness is extreme. I have spent days couch surfing. Laying in bed around the school drop offs and pickups. I haven't cooked a meal apart from ready meals and oven dinners. My house needs a good cleaning but i just cannot find the energy. I am a Beauty Therapist and am always very well presented but my appearance during these episodes becomes very poor. This time I am barely washing. I haven't blow dried my hair in 2 weeks. This sounds so silly but for me, this is very strange. I have started keeping a diary of the physical symptoms (on advice from a friend) and it is frightening me. The numbness/tingling/pins and needles is so much more severe this time. It switches from left to right, sometimes a right arm but a left leg. I was shaking my arm so hard and my friend asked me what I was doing, i was determined there were ants marching all over it but she was laughing saying nothing was there and neither there was. My knees are aching to the point I can't sleep for it. My body aches. I haven't had any headaches though which I am grateful for. I went to the Drs a week ago and told her i thought maybe my b12 levels were low and that was causing it so she took blood but they came back all clear, she said all my vitamin levels were normal. She checked for diabetes, thyroid and a million other things and all clear. I got upset and told her this history so she has made the referrals, it is just a waiting game now to see the specialist. She asked about my eyesight and if I had any problems. I told her around 18 months ago I went to the Eye Dr as I was struggling to focus. They said my left eye was slightly lazy muscle and the double vision/focus was the muscle getting tired. The Dr nodded and I asked why she wanted to know and she said eyesight problems are one of the first symptoms of MS but she didn't think my eye problem sounded like that. But the Neurologist would be better placed to help figure it all out. She sent off for more blood tests in the meantime but they have come back clear too. Of course I came home and googled and now i am panicking. I just want to know if MS sufferers recognise my story or have heard of similar which turned out to be something else. 6 weeks is not a long time to wait I understand but I feel like I am going mad.
My story is that for 6 years, roughly 12/18/24 months apart, I have periods of extreme tiredness, numbness/tingling, deep emotional upset, aches and pains and headaches. Like some of the flu symptoms without the flu. The first time it happened was a couple of months after my second child was born. I began to have strange tingling sensations in my fingers, knuckles and wrists. The Dr wasn't very helpful, asked a few questions about arthritis, ruled it out and told me it was nothing. I was very tired at the time but put it down to being a new mother again.
The second time it happened was a year or so later. I was having continuous headaches, they were severe but not migraines. They were present 24 hours constantly. When I woke up until I went to bed. One day I woke up and I had no headache, it was like silence in my head. No fuzziness and for the first time in weeks I could think clearly, no brain fog and I started crying with relief. The Dr said they were caused by stress. I also had the tingling but this time my right arm was tingling and going pins and needles too, as was my scalp. I thought had head lice, so determined was I that I made everyone in my family keep checking as i thought lice were crawling along my head. Then i realised it was pins and needles. The Dr wouldnt take me seriously and eventually it passed.
The third episode was when my son was 3. The headaches came back with vengeance. Both my arms/scalp/fingers and now toes were feeling numb and tingling with pins and needles. When I say numb, I can still feel sensation, it is like when have been laying on your arm and it goes asleep. The way I describe it is numbness followed by a rush of warmth followed by pins and needles, it is like a cycle of these sensations. This time I was feeling dizzy and disorientated. The brain fog was making it hard to function and communicate properly. I was spending days in bed and unable to follow conversations. I went to Dr and this time my bloods showed low b12 levels so they gave me the serum injections, three over 10 days and told me to come back every 3 months. I have never needed a b12 injection again. A few weeks later it passed and I was back to normal.
The 4th episode came roughly the same time as my mum was diagnosed with Coeliac. I was in a bad way and went to the Dr and asked if Coeliac could be the cause of my symptoms as I had heard it was hereditary and when i was helping my mum to come to terms with her diagnosis we came across symptoms which were similar to mine. H was rude and told me no as I didn't have the history of bowel problems that my mum had and that my problem was depression and anxiety, and tried to prescribe anti depressants. We had a huge argument where he finally agreed to take some blood and check for anti bodies for coeliac. The bloods came back negative. He again told me I was depressed. I just didn't understand. I didn't feel depressed. I didn't think I was depressed or anxious??? I didn't understand why these symptoms would come and go. I refused the anti depressants and waited for the symptoms to go again.
Now, at the present time. I have had the worst episode to date I am on Week 3 of barely functioning. The tiredness is extreme. I have spent days couch surfing. Laying in bed around the school drop offs and pickups. I haven't cooked a meal apart from ready meals and oven dinners. My house needs a good cleaning but i just cannot find the energy. I am a Beauty Therapist and am always very well presented but my appearance during these episodes becomes very poor. This time I am barely washing. I haven't blow dried my hair in 2 weeks. This sounds so silly but for me, this is very strange. I have started keeping a diary of the physical symptoms (on advice from a friend) and it is frightening me. The numbness/tingling/pins and needles is so much more severe this time. It switches from left to right, sometimes a right arm but a left leg. I was shaking my arm so hard and my friend asked me what I was doing, i was determined there were ants marching all over it but she was laughing saying nothing was there and neither there was. My knees are aching to the point I can't sleep for it. My body aches. I haven't had any headaches though which I am grateful for. I went to the Drs a week ago and told her i thought maybe my b12 levels were low and that was causing it so she took blood but they came back all clear, she said all my vitamin levels were normal. She checked for diabetes, thyroid and a million other things and all clear. I got upset and told her this history so she has made the referrals, it is just a waiting game now to see the specialist. She asked about my eyesight and if I had any problems. I told her around 18 months ago I went to the Eye Dr as I was struggling to focus. They said my left eye was slightly lazy muscle and the double vision/focus was the muscle getting tired. The Dr nodded and I asked why she wanted to know and she said eyesight problems are one of the first symptoms of MS but she didn't think my eye problem sounded like that. But the Neurologist would be better placed to help figure it all out. She sent off for more blood tests in the meantime but they have come back clear too. Of course I came home and googled and now i am panicking. I just want to know if MS sufferers recognise my story or have heard of similar which turned out to be something else. 6 weeks is not a long time to wait I understand but I feel like I am going mad.