doctors making me feel like a nut case - petrified! :(

New diagnosis and before diagnosis
1

hi i’m 26 and have been experiencing various unexplained symptoms since i was pregnant with my twins, 3 years ago.

i started off by feeling very tired all of the time, tingling in my feet, dizziness, short term memory loss… all of which was of course put down to my pregnancy which i accepted.

i would say 6 months after the girls were born the symptoms were worsening and i thought that was adequate time to leave it before returning to doctors.

by this point my legs would give way at the knees, i would have spasms in my face and shoulder, fatigue had worsened (even tho girls slepts 12 hours through the night), short term memory had not returned… so i was sent to a neurologist who carried out no physical examination and i was diagnosed with stress and post natal depression.

although myself and my health visitor didn’t believe i was post natally depressed i started taking anti-depressants to get rid of the symptoms.

2 yrs on and after anti depressants made no difference, i am still battling my doctors to get them to look into what is really wrong. i have a great job, great friends, my family are very supportive i have lots of help and do not feel stressed… the only thing that is stressing me out is whatever is happening to my body and the doctors making me feel like a nut job because they won’t listen!

i had googled my symptoms and ms had come up before which i found scary so tried to forget about it… until my recent blood tests showed my vitamin d levels were so low that i now have to take 15 tablets a day to try and get them up - and i remember cause being unknown but linked to vitamin d difficiency.

my symptoms now effect my every day life, i struggle to carry out meetings at work because i can’t connect my sentences and forget the word, i will forget that i’ve done something literally 30 seconds after i’ve done it, i’m up all through the night going for a wee, i’m emotional for no reason, fatigue is so bad i fall asleep whilst driving or in a restaurant, spasms/tingling much more frequent (in fact my feet are tingling now lol!)

i guess what i need to know, is am i right to be concerned about ms? i really do feel like a nut job i cringe when i need to contact my doctor because i feel like they think i want there to be something wrong but i don’t - i just want them to find out what is wrong and make it better! i have this gut feeling and it wont go away, and the worry that something is wrong and about what will happen to me or the girls is driving me mad! help please… :frowning:

2

Hi Jade86

I completely sympathise with what you are going through. I too had been experiencing unexplained symptoms for a few years (tingling, pain, headaches, vision problems and bowel/urinary issues) and had been to various consultants (Urology, Gastro, Gynae). None of them found any explanation for my symptoms, even though my blood was showing that there was a problem (high CRP and white blood cell count).

When I spoke with my GP (after another negative test result) I was quite emotional as these symptoms had been present for so long and no one could tell me why, so it was obviously getting me down. My GP took my distress as being partly to blame for my symptoms and he decided to refer me to a pain clinic to manage my symptoms rather than try to figure out what was causing them. I felt like I was being fobbed off. I knew myself that something wasn’t right and this was the only thing in my life which was causing me concern.

I decided to get a second and third opinion from two other GPs outwith my medical practice and both immediately questioned why the possibility of MS or an MS like condition had not been investigated. They both suggested I go back to my GP and demand to be referred to a Neurologist for possible MS symptoms. I never told either GP what the other had said so I was confident that their similar opinions were the right way to go.

I went back to my GP and explained what I had done and that the other GPs thought MS could be a possibility. He went mad, said there was no way it was MS and was determined to still send me to the pain clinic. After a lengthy and heated discussion he eventually gave in and made the referral to Neurology but I was unhappy with the way he worded the referral, which basically said that in his opinion I was being over anxious about my symptoms and that he didn’t feel the referral to Neuro was necessary but to put my mind at rest he referred me.

The wording made me worry that the Neuro would not take me seriously so I made a complaint about it to the practice manager who had the letter re-worded.

The Neuro was brilliant. He did a reflex test which confirmed abnormalities down my left hand side and balance tests which I failed. He then referred me for an MRI of the brain and spine. The MRI came back showing I had 9 lesions in my brain and spine (several inactive at the time of the MRI and one active) and he was confident that I had MS. Although he was confident we still went ahead and did a lumbar puncture to test my spinal fluid and that confirmed MS 100%.

If I hadn’t pursued a diagnosis and had just accepted my GPs opinion, I would still be suffering now and possibly for the rest of my life.

I’m not saying that you have MS as your symptoms could be caused by hundreds of different conditions, including the vitamin deficiency you are currently being treated for. However, only you know how you are feeling and you have to trust your own instincts. If you feel strongly that you are not getting the medical treatment you need then you have to make that known to your GP or practice manager. If you feel your own GP is being unhelpful check if it is possible to change to another GP in the practice or move to another practice alltogether.

I know it is tempting but the worst thing you could do is google your symptoms because you will always latch onto the worst case scenario. Whatever you do don’t let the thought of MS eat away at you and continue to live life to the full. But please push your GP to get the help you need, if only to put your mind at rest.

x x x

3

Hello and welcome

It drives me mad how doctors don’t bother looking further than the word depression on someone’s medical record. I have seen this in action several times in my own family and it is utterly WRONG.

Yes, depression can cause all sorts of symptoms, but if treatment for depression does not stop or at least reduce the symptoms, there must be another cause! This is simple logic after all!

Vitamin D deficiency does not, as far as I know, cause many of the symptoms that you list. Something like vitamin B12 is a more likely culprit. I wonder if you have ever been tested?

If I were you, I would first see my GP and have a very straight talk with them. Tell them how unhappy you are that you are not being taken seriously, that you have done what’s been asked of you re anti-depressants, but that you still have symptoms that are significantly affecting your life. Ask for a referral to a neuro and tell them that, given your previous experience, you want the referral letter to merely state that you have been experiencing x, y, z for the past X years and that you are vitamin D deficient. (Like anon said - no mention of depression!)

If the GP refuses, then you need to get a new GP.

Could it be MS? Possibly. But there are also many many other possibilities, some of which just require the right supplements to stop. But first you need a GP who will take you seriously (or at least allow a consultant to investigate with no preconceptions).

Good luck!

Karen x

4

Hi Jade,

I can sympathise and empathise with so much of what you are saying.

I have many of the same symptoms/feelings and due to my work (Im a social worker) all the GPs I have seen are too quick to latch on to stress and depression as this is so common in my profession. What isnt helpful is that I clam up when I get frustrated, as if I open my mouth to argue my case I just know that I will cry and this will give them even more ‘proof’.

Its like this;

GP: what do you do?

Me: Social worker

GP: Hows your case load?

Me; Huge

GP; Have you any holidays booked? Grrrrrrr

I then dont go back to the GP as I think they will have me down as a Hypochondriac.

I am a firm believer that as a 55 year old I know when there is something wrong with me that cant be sorted with pain killers!!!

5

Completely get it. Even after diagnosis, my neuro made me feel like I’m imagining the symptoms. And belittled and embarrassed me. I won’t be going back.

6

I’m in a similar situation, my doctor made me feel like I was loosing the plot. I was put on anti depressants, when I was telling my GP about my frustration (because I don’t think I’m depressed, my life is brilliant! haha) he was so patronising. I’ve managed to moan my way into seeing a neurologist and I’ve got a MRI scan on Friday. It really is frustrating when you feel as if people don’t understand, especially when you’re explaining symptoms. But you know your own body, some GPs just need a kick up the bum, I’m not sure why they’re so resistant in terms of referring people to specialist or for tests because they don’t know everything about everything. Just just your GP a push in the right direction!

x