Possible MS?

Hi All, I’m new to this, well new to discussing it as opposed to the symptoms being new.

I turned 50 in March (ugh) and have had many different problems for a number of years. It all started when I was about 9, and I realised I had tinitus. It has never gone away since then. And at 14 started having problems withe tail of my spine. When I was 23, I had Bells Palsy down the left hand side of my face. High doses of steroids did work wonders but there are still a few little reminders of it, mainly when I yawn and my eye doesn’t close as fully as it should do. I was also diagnosed as having Reynauds, the specialist told me it was pretty severe, and I had the blood circulation of a 85 year old. Then I had a very severe sore throat, and it later transpired it was the streptococci virus and it moved to y foot and leg, which I later found out I was approx 36 hours away from death (thank goodness a GP at my health centre recognised it after three visits there). Life carried on, got married, had more babies and when pregnant with number 4 I started getting what I now know to be restless leg syndrome, although it wasn’t to serve at the time.

Again life plodded on until 2008 when my RLS wasn’t just a nuisance, it came to the point where my body was starting to have problems with it and I was put onto Ropinirole. It worked to a certain degree. I started having problems with my swallowing. At first they thought I had an ulcer etc. Had a camera down, was placed on horrible drugs, and had a barium swallow. And it was found that I wasn’t swallowing properly. I had the swallowing of a 80+ person. Having had a bad back since I was around 20 and not really taken much notice of it, I eventually had x-rays done at the beginning of 2009 to find out I have Spondylosis of the neck and spine. It is actually my spinal bones that are eroding and not my discs. But NHS physio couldn’t do anything as my back was, and still is so sore on being touched.

Then in June 2009, I started becoming incredibly itchcy, especially my scalp. I was convinced I had nits, and was always asking family members to look at my hair! It was driving me insane! I also started grating my teeth so badly in my sleep, and have since found out I also do it when I’m awake. In 2010 my GP put me on to Madopar for my RLS, as by this time I was going insane with it, mainly due to the fact that I wasn’t sleeping. I then eventually got to see a Neurologist, who said I didn’t have Parkinsons disease and that was that. In 2011 I was diagnosed with Costochondritis by pure accident when a doctor was tapping on my chest after being rushed in to hospital due to low blood pressure, and I jumped through the roof. This I had since 2004 at the earliest but never thought anything about it. In 2012 one Monday morning in October I woke up with severe electric shock pains on the left hand side of my scap every 2-3 minutes.

Saw my GP and he referred me back to the neurologist. He was so arrogant. I made a list of all of the problems I was having including sever craps in my hand resulting in me lo longer able to write very much. He did a few tests, including sticking pins in my scalp, and what concerned me was I could not feel it in one particular area. But I was also having problems with my scalp where it was so sore to touch, especially when I washed my hair. The neurologist asked about headaches, I said I got them just like anyone, although just a couple of weeks earlier I had one which was quite sore, and had stuck my head in the cushion on the sofa and had fallen asleep for approx 30 minutes.

And on that he diagnosed me with migraines, and said it was all down to stress as we had a 12 year old who is autistic! By this time we had eventually, after 8 years of fighting with a horrific system for diagnosing autistic children, got a diagnosis of autism and his many disorders and after 8 years of violent behaviour from him, things were beginning to even out. So in no way was I stressed. He made an appointment with a psychiatrist for me, which I cancelled. I explained all of this to my GP, and he said he thought there was a good possibility of it being a type of neuralgia.

18 months ago, for no reason at all (I hadn’t had an injury to it) I started having problems with my big toenail. It stopped growing on one side but was still attached on the other. No-one could give an explanation for it, especially as I always wear good walking shoes, which save my feet from everything. And yet the big toe on my opposite foot grew a ridge in exactly the same place. When you look at them now, they look normal again.

Life plodded on once again, and I started getting really strong electric shock pains in my leg about 5 inches up from my knee. A different GP dismissed it. Then my nose started tingling two years ago, but my GP thought we would just sit with it for a little while. But about 6 weeks ago everything started pulling in together. My nose , lips and my tongue started tingling then went numb.

I rang my GP and he said he was referring me to a different Neurologist. I’m actually lucky as although it’s a decent size Health Centre, there are a couple of GP’s who are excellent. Yesterday I was in seeing him about something else and I told him I have had a letter from the hospital but I’m probably not going to get an appointment until mid September. We got talking about all of the issues I have, he asked me about bladder and bowel control, about my eyesight etc etc and he sat there and looked at me for a while and said, I’m wondering if we should be looking at MS, to which I replied yes, that was my thought. He knew I had a feeling before he said it as being honest he knows what I’m like.

Over the last 48 hours I have itchy body, mainly scalp and torso, tingling nose, moth and cheek. I have burning feet. I have problems passing water, but also leakage, I have recently acquired IBS, or what appears to be it, and that’s been playing me up. My eye has been twitching, although that did start a number of years ago. I am dropping items, I am kicking sofas, and unfortunately the dogs water bowl always seems to take the brunt of it when its full. It seems my size eight feet suddenly become Ronald McDonalds clown feet!

But one thing thing that has puzzled me for a number of years is why my arms and hands, especially my fingers suddenly go very tingly and always feel as though they are going numb, although they never do. I have muscle pains especially at the tops of my arms, and the tops of my legs. I have been on quinine for the last 2 years due to severe muscle cramps in my legs and feet causing toe spasms. My eyes sometimes struggle to focus. I received reading glasses in November, but within a month they had to have the lenses changed. And am now considering to go back as I’m struggling with the ones I have. My spondylosis is exceptionally bad as is the tail of my spine.

As I’m sitting typing this I am getting waves of burning pain across my scalp, mainly the left hand side. Something I forgot to mention. This started just after the electric shock pains in my scalp three years ago, and have just had to jump up off my seat due to a severe muscle spasm in the back of my thigh. There are probably other things which i give little consideration to.

But my memory has gone. The one thing I am very proud of, is I am a self taught knitter, and I sell my items. The most intricate aran and lacy patters. I could knit anything, and after repeating a pattern would know it off by heart and could pick it up the next day and carry on. Now, I have to have the pattern in front of me, and can’t even concentrate on it. Same goes for tv programmes.

I am so sorry for boring you all. But this has been with me for a long time. I would rather know than not know, and I am hoping that my new neurolgist will take all of this seriously. For the last 6 months, I have been on 3 different anti depressants as everything is really getting me down. But, they have caused me massive weight gain, and obsessions with chocolate! And that is also a catch 22 situation. But my issues started so long ago now, it couldn’t be blamed on my depression, or lets hope they don’t try!


I’m no Dr, but have you ever had a brain Mri?

maybe with the visit to next neurologist maybe ask if he thinks it maybe viable for one as persistent symptoms are not subsiding.

hope you get answers soon

kind regards

Heidi x

Hi Heidi,

No, the neurologist did absolutely nothing other than belittle me and my problems. This has been going on now for being honest, many many years, No MRI, No other scans, just your usual blood tests where I was slightly low on iron, which being honest, all of my life has been like that, but it’s nothing severe. I’m currently taking multi vitamins with iron, and separate minerals, so there can be no excuses of my bloods being low.

The problem is, they make you awkward, so that you are totally in their hands, and I don’t like arguing with a professional, in the same way when I was working, I didn’t like it is someone argued with me when they didn’t have a clue about the rules and regulations on the railways.

Maybe I need to be less passive with them. Although, at the time, I did feel as though I was contradicting them. I need a really nice neurologist!


I unfortunately (or fortunately on some occasions) that I need to know why I am having the problems I am having. I know some people would rather not know, I’m not like that. I’m sitting here with electric shock pains and burning waves on the left hand side of my head, and yes of course, I would like to know why. But, I am sure, I have a right to know. And after the last neurologist was sticking a pin in my scalp, and I couldn’t feel it, I think he wasn’t telling me the whole truth, and boy do I hate that.

I was actually considering a ‘Access to Medical Files’ application, especially as I know neurologists will ignore many appointment contents, and put off giving a diagnosis for MS. And if it’s not MS, and it is something else, well they have a right to tell me. I am also aware that diagnosis’s are being put of left right and centre due to the NHS cutbacks, but also the effect that any diagnosis will have on the welfare, education, NHS etc system. I suffered 8 years of that with our autistic son, and was actually told that the financial impact of him being given a diagnosis was massive. Hence the reason they would not quickly diagnose him. After moving to a different NHS and 2 years of horrific treatment, I put in an official complaint to the NHS regarding their lack of a diagnosis and also a complaint about 2 psychiatrists and 2 psychologists, we had a diagnoses on his second appointment all within 3 weeks of the complaint!

Its all to often political and financial that effects your chances of getting a diagnosis. I know this only to well.

Too right you have the right to know what’s going on with your body hum, couldn’t agree more, I think that is the worst thing is the “not knowing” do you feel like you have a good relationship with your Dr?

Is there any chance of asking for a second opinion to be seen by another neurologist at possibly another centre?

maybe a pair of fresh eyes may see things that have not been so blatant to others,

i really do wish you well, I do know the frustration of not knowing, and I am too like you I would prefer to know what is happening,

please stay strong and fight for your answers Hun.

Someone said to me in February when I hit rock bottom after Dr saying you may never be diagnosed… You and you alone know your body more than anyone one else, you know when your body is telling you that something isn’t right,

I truly hope you get answers soon, x

heidi x