help!!! undiagnosed but lots of symptoms and noboby belives me

New diagnosis and before diagnosis
1

hi im sorry if this is long winded but i need some adivise.

i have been suffering for years now and nobody in the medical world will listen or belive me ,so any opinions good or bad will help.

it started a few years ago with TN and awful dadilitatig fatigue,i now have a couple of patches of skin on my face that are completley numb.this is also when i started to suffer from constipation wich i now take laxitives for every day in order to go 3 times a week if i am lucky!!i also suffer from pins and needles and twitches at this time after going to the dotcors numerous times they eventualy sent me for a blood test,wich came back slightly low in B12 ,folate and iron,they told me this was causing all my symptoms and i will be fine when they are back to normal!!things still were not any better os i was sent to a neuro who sent me for an MRI wich came back normal and he said as the scan was clear they could rule out MS.

2 years on age 39 things are getting worse i feel drunk and weak most of the time i havent been able to work since the summer when i passed out and collapsed,i am getting quite a few tremmors wich they noticed in A and E wich they gave me medication for when i was there,i have also been low in vitD i suffer awfully at night with horriffic burning in my feet most of the time to the extent that i put socks in the freezer to put on my feet at night.i have had double vision in the past wich the eye hospital found out was convergence insufficiency and i now suffer from psoriasis!!

i have had times when i have been stranded,once in a shopping centre as i totaly lost the feeling in my leg and i also, had to pull over in the car as i couldnt change gear as i lost the feeling in my hand i found this really scary and am now afraid to go out on my own,and am left with a perminent numb patch on my left leg.

i asked a doctor if i could have a second opinion from a neuro and had the appoinntment wich left me in tears andmy husband disgusted,i walked in and he said all my symptoms are due to depression and in my head and his exact words were I CAN TELL JUST BUY LOOKING AT YOU THAT YOU DONT HAVE MS!!he didnt even examin me!!

sorry to keep on its not that i want ms ,i just want help with all my symptoms to get a better quality of life for me and my family its getting us all down i used to do so much i used to love going out a riding across country with my daughters somethimg i can only dream of now!!!

once again sorry for keeping on ,i just didnt know wher else to turn for advise,and now i need a rest as this has been exhausting LOL

2

I’m not too familiar with how to handle this sort of thing, but perhaps you could take this to PALS? That comment from the neuro you saw last was unacceptable. Good luck in pursuing your case!

3

i don’t mean to sound stupid but what isPALS?

4

Are you underweight by any chance? Some of the symptoms for an eating disorder could cause your symptoms, symptoms of having an eating disorder:

  1. Heightened irritability and impatience
  2. Catastrophisation: anticipating the worst, perseverating on “worst case” scenarios.
  3. Feeling restless and agitated
  4. Tension, aches, pains and/or gastrointestinal complaints
  5. Insomnia or disrupted sleep cycles
  6. Rumination (particularly on past or recent interactions in which the patient felt questioned, disrespected or overlooked)
  7. Avoidance (lower than usual levels of social interaction, involvement in familial activities…)
  8. More frequent and more intense expressions of anger
  9. Indecisiveness

Ladty the reflection in the mirror doesn’t feel quite right, as if not complete/full, because vision-brain connections temporarily affected.

Is it an eating disorder?

5

And also difficulty concentrating, fatiguing easily.

6

Oh dear.

I’m so sorry you’re going through all this. I know that vit B12 can ‘mimic’ MS and cause serious damage to the nervous system if left untreated. Did they tell you why you were deficient (i.e. did they rule out pernicious anaemia - an inability to process vit B12)? Did they offer you injections and are you still having these? Sorry to ask all these questions but it can have a bearing on what’s going on.

Mags xx

7

i dont have an eating disorder i have put on 2 stone in the last yea ras i am not as mobile as i used to be , and when i was b12 deficient i had to do a food diary as they accussed me of being vegitarian!!!???

thank you for trying to help though

8

Its not an eating disorder ,i have put on 2 stone this year as im not as moblie as i used to be ,and had to do a food diary as i was accussed of be ing vegitarian when i was low in B12 but thanks for your input any advise is a help

thanks for taking the time to read

9

thanks for trying to help but definatley not a food disorder,i have put on 2 stone in the last yaer as im not as mobile as i used to be,also when i was low inB12 i had to do a food diary as i was accussed of being vegitarian!!??(no chance)

thank you for taking the time to read though

10

hi mags

had a coarse of injections and touch wood havent had it since,and i was tested for pernicious anaemia and that was ok,this was about three years ago,its just that i heard it was not unusaul in people with ms to get low in this or vit D

thank you for your help everyone on here has been so nice

11

Okay no problem. Sorry i wasn’t able to help

12

PALS is the patient advisory liaison service. They deal with complaints and queries, all hospitals have them. Get in touch and like rekiblossom said they may be able to help you find a different doctor. Good luck.

13

I agree that PALS may be a good place to start, as there’s obviously something going on and tbh I’m shocked by how you were treated by the neuro.

If your GP is sympathetic, I would also ask for his help in getting a second opinion.

If you can afford it and want to speed things up, some neuro’s work both for the NHS and privately, and will see people without a GP referral (wish I had known that years ago). Mine was £240 for the first appointment (£120 thereafter), and if they have room on their NHS list they can add you to that for the tests (MRIs/bloods) so that you don’t have to pay for them.

I hope you get some answers soon hun,

Mags xx

14

Hi 123 ABSOLUTELY OUTRAGEOUS WHAT THAT DOCTOR SAID I.e he could tell by looking at you you didn’t have MS. What an absolute idiot. I see that this doctor was your second opinion. Not sure how your GP would react if you asked for a third opinion. Have you had any MRIs? I would read NICE guidelines for MS as doctors are supposed to follow this. I can’t remember what it says but it might give indications for when an MRI is needed e.g the weird symptoms we have - which it looks like you have. PALs as already mentioned definitely worth contacting. Good luck and let us know how you get on Hugs Min xx

15

Hello

Sorry your having so many problems…I really feel for you.

What kind of relationship do you have with your gp? if its not good, then maybe you should do some research and move to a better one.

You mention you have Psoriasis. I have this and also Psoriatic arthritis now…have a look on www.arthritisresearchuk.org and see if you match any of the symtoms. Maybe you should be asking to see a Rheumatologist, mine arranged x rays showing I also had cervical spodylosis (knackered bones in neck area ) I went private for first appointment to speed things up. This was in 2007…cost about £160, he then switched me to NHS and I carried on seeing him.

I am not saying you don’t have MS…I was diagnosed in august. I just think because of your Psoriasis then you have every right to be asking for a Rheumatology referral.

Keep coming on here for support and don’t give up will you?

Take care, Noreen

PS: Next time you see a Doctor/Consultant who blames your symptoms on depression, have a private smile to yourself.

It means in my opinion they are not very good at their job…its just a cop out. We all get depressed but you don’t come across as clinically depressed to me…just worried which is natural. xxx

16

hi e veryone

i would like to thank you all for your support as i had almost given up!!

i have been unwell in bed for a couple of days feeling exhausted with a numb leg brain fog and tremors so sorry i didnt respond sooner.

i wanted to ask a question about eyes;do any of you have one pupil that is sometimes larger than the other?

i have had this for a couple of years now,and when i mentioned it i was told it was anisicoria.i also told another gp who i saw and he said they both look the same to me!(mind you it does come and go)

when i recently had an eye test the optician noticed this and said that my pupil was also puslating at times (hippus) and said i should mention this at my neuro appointment but as you know by my previous post i never got a chance to even tell him!!

i have had double vision and blurred vision in the past and even loss of colour vision also eye pain a bit like having neuralgia in your eyeball,the last time i had this i went to the local walk in centre,who said i should book an appointment with my gp as she also saw my pupil puslating and said she had never seen anything like it before .BUT yet again the GPput it down to migraine and gave me painkillers and said it was nothing to worry about!! i was woundering if this could of been optic neuritis?

once again cant thank everyone on this sight enough,my lovley sister-in-law is going to help me try to get through PALS this week,i will let you all know how i get on

thank you all again xxxxxx

17

Hi -

I think maybe one of the biggest hurdles about seeing neuros is the fact that sometimes symptoms come and go - so any particular symptom is not happening during the time of your appointment, the neuro might not observe it , and therefore might not be able to comment on it / doccument it etc . I know that sometimes (thankfully, very rarely) have a slightly unusual / awkward walk, but it has never coincided with neuro appointments, so all letters from neuros state that my ‘gait is normal’.

I guess one thing you coud do is to ask your different medical practioners to write to each other in order to help collate the evidence.

An opticians records would not normally be included in your medical file (eg I don’t think for one second that my specsavers optician ever corresponds with my gp!). But - if your optician has told you that you have ‘hipus’, they should have doccumented this in your notes. Could you ask them to send a copy of this to your neuro (they might charge you a small fee for this, but I can’t imagine it would cost very much). That way your neuro will have doccumented opinion from another medical professional… it might help speed things along a bit?

xxx

18

“i wanted to ask a question about eyes;do any of you have one pupil that is sometimes larger than the other?”

Yes - I get it regularly, although normally it’s my wife who points it out. AFAIK it can’t be Anisicora if it varies. Possibly it could be Relative Afferent Pupillary Defect (RAPD). You’d need an ophthalmologist to confirm that.

I’m still waiting to see an ophthalmologist about my eyes. When I saw the optician recently he couldn’t observe anything wrong (typical!!) but still referred me because of what I’d described. To check for RAPD they do the Swinging Flashlight test, which my optician didn’t try.

There’s only a few known causes of RAPD and MS is one of them, but it’s by no means the only one.

Good luck with PALS BTW.

19

Hello 123winbourne123,

I was googling very similar words to your Post title, and here I am. Although I live in the U.S., I signed up here just so I could reply to your post. The main PURPOSE, “You are not alone!And we are not crazy nor depressed, nor inventing these symptoms!”

I’ll give you a bit of my story, and we can keep eachother company in our plight. I am 37 years old, born without a Thyroid Gland (autoimmune?), many medical mysteries in my file, took doctors 3 days to find Appendicitis when I was 14 as I also had Ovarian cysts when I just started my menstrual cycle (TMI? lol), lots of other weird things over years, but I will spare you the details and fast forward to recent times…

I had Gestational Diabetes 4 years ago, after giving birth it went away, and left behind Migraines, 6 months later this traded places with severe fatigue, Vitamin D and calcium deficiencies. 2 years ago February 2012, Type 2 Diabetes returned, meds skyrocketed my Blood sugar…so went on a strict diet and excercize regimen, became very fit, but was struglling with my feet going numb and severe pain in my legs. July 2012, BS levels were creeping up regardless, and felt drunk all the time, so I drank silver Agave Tequila, and it actually helped a lot!. Aug. 2013 GP suspects Type 1 Diabetes vs. Type 2 start insulin shots, referral to Endocrinologist took 2 months, was never called with BW results (very rude too), Nov. 2012 went into severe DKA, spent 10 days in the ICU, Touch and go for 7 days. Dec. - Jan. 2013- developed Extreme fatigue, rollercoaster ride of Blood sugar at 20 and 400, Normal is 100. My body was a mess, cholestorol, liver enzymes… refused meds and got levels back to Normal w/in 6 mo. and also have my Diabetes under control. Yet, Now over the last year, I went to a Vascular Surgeon for my legs, had veins stripped… and my legs are now atleast 3x worse, I now have what I would describe as deadening down the backs of both legs, jerking, tremors, numbness, burning, tingling, lightning pains… and I too have gotten stranded with three young children at the park unable to walk (VERY SCARY!) I’ve had Bloodtests for RA, Celiac disease, allergy panels, hormone panels, and other factors. No, no, and no, all negative. Put on anti-depressants, 3 weeks later suicidal, stopped immediately.Thought I had a stroke a few months ago when I woke up, couldn’t move or speak… In the last month it’s gotten horrifying, and my husband was in denial too big time. Although he’s getting better. I lost vision in my left eye completely returned within 24 hours, have constant vision issues, blurry, double, auras, light flickers, vertigo… Went to Opthamologists, diagnosed with “Ocular Migraines” No answers, with shot in the dark treatments. Doc says, “Best thing to do is go in a dark quiet room until it goes away” I burst out laughing, said, " I have 4 children, and 2 full time 3 year olds, any other options?" Well you could try a Nuerologist, but I doubt they figure it out either"… and my laughter turned to tears of extreme frustration/hopelessness. So 3 different doctors referred me to Neurologists, I’ve ruled out my symptoms being Diabetes related, and or anything else. So, even with a lifetime of little faith in Medicine as it has applied to me… I took the Bull by the horns, dug down into researching… and demanded I be referred directly to MS Specialists. DENIED! On month 2 waiting for MRI and other Nuerology Tests. I HAVE EVERY FREAKING SYMPTOM, and it feels like an air raid arsenal of bombs going off, and dancing all over my body. Oops there goes my vision, uh oh, wait! come back hand, I was using you! Dang it, my kids crying in the other room come on legs, move it. Oh crap, I’m gonna pass out. No I’m not, wait yes I am, nope I’m good, oops no I’m not…Bye kids. WHEW! I’m back, Oh, man here comes the head squeeze, dang it my eyes are going to explode! Ooooooo, ahhhhhh, ooohhh thats pretty, as I watch the dispay of light auras,shadows and colors. Here comes a head jerk, hell yeah, now we’re having fun… lets throw in a little hand tremor… now rock and sway. Oh yeah, I got this dance down! Ah, poo… my arm won’t get in the grove, or move! Ooooo, here comes the throat, guess I can’t sing along… swallow, or breath very well. BUT NEVER FEAR, your heart is still here providing the Pounding beat! All the while my kids climb on me like a jungle gym? Funny? HELL NO, but I’m sick of being scared, crying and trying not to frighten my children!

So I am trying to laugh instead, I hope you got a chuckle as well! Also wanted to let you know, I found a local support group that meets in person, and welcomed me eventhough I am undiagnosed. Just 1 meeting for a yoga class really helped me know I could find a way through. Check it out! AND KEEP ME UPDATED!

20

I am so sorry you are going through this. I too have gone through a similar situation. I was misdiagnosed with tia’'s which are mini strokes. Every time I had symptoms, I would go to the hospital and they said I did not have a stroke. I stopped going and decided when I die, I just die. No one ever thought to check for anything else and every time I did research on my own, MS would come up. I ignored it cause they said it wasn’t ms. I got so bad, I could not walk and could not talk well and shook like a spase. My regular Dr. said if I did not go to the hospital, he would send an ambulance for me. So her I go and of course they said no stroke, but one Dr. ask about other disease I had such as celiac and an autoimmune thyroid and he said he thought I had MS, So I finally go to a different neuro and I have had it for 19 yrs. I am in the mid to late stages because of idiot doctors. Go with your gut feeling and keep going to different neurologist until you find out what it is. It may not be MS, I don’t know,but it sounds like it is. Tell them if it is not MS, you need to know what it is! I wish you the best and I hope you can get a proper diagnoses.