scared and need an understanding ear

New diagnosis and before diagnosis
1

HI, sorry if this drags on a bit:

I wrote on this site about 8 month ago about issues I was having and tried to seek some advice. A year and a half ago I went to the docs as I had a painful shin bone for a few weeks, whilst sitting in the waiting room I got really severe pins and needles down my leg/bone. When I went into see the doctor I told them about this and they sent me for a leg xray which was clear… a few days after this I started to feel faint pains in my chest which over the course of 48 hours got worse. Ive never felt pain like it it was like having contractions across my chest this lasted 3 days and were so painfull I was screaming and could not sleep, I went to hospital and they put me on heart monitors, I told them it was as though my muscles were contracting and I was fairly confident my heart was fine. They just said my heart was ok and sent me in my way without even looking into what happened! Not long after this I had pain behind my right eye and severe pain in my face around my cheek as if it was on fire.

I went to see a doc who tried to dismiss me until I demanded a neuro appointment, I went to see the neuro in October 2016 and he done toe pricks etc and said he didn’t have many concerns however would send me for an MRI for ‘peace of mind’ I went for the MRI and got a letter saying there is a handful of white matter hyperintensive lesions on my brain, border line significant for age… he sent me for a further scan on my brain in March this year the images are the same and he wants me to have another in 6 months.

Since the last time I seen the neuro there has been so many things happening to me which cant be explained but getting an actual appointment with him is near impossible, and when I try discussing these things with the doctors they just say that this is not MS and I need to fix my thought process as im causing the issues and pain by making my brain think there is something wrong with me……even though I have actually woke myself up in agony whilst in a deep sleep…

All the pains and strange issues I have are down my left side only but the face and eye pain is always on the right

A few examples of issues that are happening to me are :

Tingling shin and ankle bone

I have two numb toes which have never came back been like this for around 7 month or maybe slightly longer

Tingling lips

Internal tremors

Face pain

Cold night sweats

I am slightly concerned that the neuro is sending me for brain scans alone and not scanning my spine as these issues used to come and go but for 4 months they have been constant even with 6 gabapentin per day. Does anyone know if it would be beneficial to have a brain and spine scan? What im yet to say is my mam had MS and it was primary progressive she was 46 when she developed it and passed away through complications caused by the disease two years ago at 58. I am 33 now, my mam had tests for years and they couldn’t work out what was wrong and by the time they figured it out she was already paralysed. I think because of this the doctors think im over sensitive and paranoid by MS and like im hell bent on a diagnosis, which I am not im just really scared and concerned. I know this is not in my head but feel like everyone is determined to just tell me to go away and I am mad and that the ways which my pain comes dosnt fit the pattern of MS

For example: u don’t get localised face pain just across ur cheek bone, it would be the entire side of the face….

You cant just get a couple of numb toes it would be all of them…

you don’t get chest pains in MS

ive read these thing have happened to people yet the doctors just keep saying im imagining it all.

End of the day it still may not be MS and great if it isn’t! but I don’t just want to be told im mad and have nothing looked into. I don’t really know what im asking tbh but I just would like people with MS to advise me of weather im overthinking these things or If I should persist.

Thank you all for your time

2

I would disagree with all the assumptions that the medical profession has made.

u don’t get localised face pain just across ur cheek bone, it would be the entire side of the face. Trigeminal neuralgia - Symptoms - NHS

You cant just get a couple of numb toes it would be all of them… This is just personal experience; I was diagnosed 44 years ago; have only one attack which left me with a numb little finger on my left hand; still the same today.

you don’t get chest pains in MS. Have they never heard of the ‘MS Hug’? Why does MS cause the hug or girdle effect?
This is a spasm-type symptom that is one of the more unusual effects of MS. Between each of our ribs are tiny muscles called intercostal muscles. These hold the ribs in place but provide flexibility at the same time. If these muscles go into spasm, the result can be uncomfortable or painful. This is sometimes referred to as ‘banding’.

Effects
People with this symptom of MS describe a burning or tight sensation which spreads around the rib cage, causing a crushing feeling that can range from uncomfortable to very painful. Sometimes it is accompanied by pins and needles. Most commonly felt around the ribs, occasionally the effect is experienced in the hands or feet.

Treatments
Individuals with MS who experience the hug or girdle effect do not always have the same degree of intensity of pain. For some, it is no more than an uncomfortable feeling, which passes without the need for any treatment. Others, however, need pain relief to deal with the spasm. Analgesic cream, warmth and painkillers are all used to provide relief. Your medical professional will discuss how best to manage your pain and will bear in mind any other drugs you are taking

Yes you should have brain and spine MRI.

Now I’m not saying you have MS; only a Neurologist can do that; I’m just disagreeing with their findings.

Good luck.

George

3

Bit more Mich,

4

Thank you ggood, Yeh I had heard and read the information that you have shared this is why I can’t understand why they are so dismissive of me. Before I was sent to see a NHS neuro I went to see a private one to seek advice and he said I cud send you for an MRI but what’s the point… I tell you you have MS we can’t do anything anyway so do you really want to know. I don’t know if people still just have a huge lack of understanding of this disease or its it’s just pure ignorance but they process and treatment of people with symptoms seems to be awful. However I shall keep going to the doctors and telling them of all my crazy body issues untill they take me seriously.

5

I don’t agree with what I am about to suggest but it is the only way out of a catch 22.

Go private; cost between £2-300, but first ask on here for any recommendations in your area; you don’t want to jump out the frying pan.

No references from your GP needed, any further treatment; drugs or hospitalisation have on the NHS. This is perfectly legal; should not be necessary but it would be nice for you to be taken seriously and if this would put your mind at rest it would be worth it.

George

6

Thank you so much for all your help with this! Yeh I think that is what we are going to do as waiting about and being told I’m mad is just not helpful at all. As I’m sat writing this I have a really bad pain at the top up my foot above my two numb toes which has been ongoing for 48 hours and recurs quite alot. It can’t just be my head and I know this. I really appreciate your help with this it’s nice to have someone on your side.

7

Hi Mich

I’m on your side too x.

I agree with all George has said above (he talks a lot of sense does George). Find a local private neuro (not the one you went to before) and tell him what you want done - MRI of brain AND spine.

I’d also look into changing your GP, he should be pushing this on your behalf not just letting it go on and on. My previous GP was like that too, said everything was due to my age. Post menopause. I changed GP and was overwhelmed at the difference. I felt like I actually mattered.

Good luck, hope you get a dx soon (and hope it’s not MS)

Ang

8

Thanx AngC i appreciate that so much! My surgery is rubbish and everytime I go I have to just get an appointment with any available doctor so I have in fact spoke to around 5 different doctors about this all who have the same ideas about MS. One even showed me a flow chart of how the brains thought processes work and the suggested counselling! I will try and find a good neuro I live in newcastle upon Tyne if anyone knows anyone good from that area a name would be appreciated. Thanx again x

9

I have only recently been diagnosed with Ms. Initially doctors thought I was having mini strokes but I knew this wasn’t the case. I had been telling them for months I knew I had ms. It was a relief to eventually have a diagnosis. I guess what I m trying to say is you know your body better than any doctor go with your instinct. Best of luck.

10

Yes I agree sapphire! And this is why I’m like a dog with a bone! This is my life there is no way I’m giving up on this untill it’s proven or discount proven! Thank you!