I am a lady living in the uk 31 years of age It all started back in February 2009 where I was falling a lot whilst working this became more frequent and was starting to suffer with walking problems fatigue urinary problems and speech and swallowing problems . I was seen by physiotherapy on many occasions they wasn’t sure what was wrong . On my last session I saw two new physiotherapist who examined me and explained that i may need to be seen by a neurologist … I was then saw by a neurologist who asked me of my symptoms and checked me over . He said let’s do a MRI and see . I had my MRI 6 weeks later which was clear then I got a letter of the neurologist saying he has discharged me . My gp then sent me to see psychologist who did not find anything to treat only physical problems . I started to become more weak around November 2010 with tremors and was very tiered all the time . I couldn’t walk more than ten meters without pain in the leg muscles and feeling weak … The legs and arm muscles would shake most of the time . I was trying to get to the toilet as quick as I could as the urgency to go just creeped up on me but evening time I would suffer with a lot of retention and would really have to squeeze to try to urinate . I would sit 20/30 min at a time . My gp wasn’t supportive of me at all in fact he would get angry with me and smash his hands down on his desk as if he was as frustrated as me but he didn’t have to live with the battles I faced everyday . I knew I needed help but I just didn’t know who to turn to . I asked some family members if they would help me see a private neurologist to see if I could get any more investigations done to find out what is happening to my weakened body . I saw a new neurology privately 12/10/10 He examined me and noted a functional gait with fixed inversion and planter flexion deformity of the right foot. He sent me for Botox injections and I had MRI of the spine . He asked me if I’ve ever been abused I laughed at him and said no I’ve had a great life up to now thanks . He then stated that I may have functional neurological disorder . I felt so so annoyed that these doctors really think I have some physiological issues causing my problems I knew I didn’t but I just went along with what they was saying as I am not a doctor they are . Spinal MRI was normal … I was seen by neuro rehabilitation unit on 2/3/11 the doctor noted increased tone in the flexor hallucis longus which is contributing to her foot inversion and had Botox 100 units right flexor hallucis longus 100 units right soleus 100 units right gastrocnemius . These were all active under the EMG guidance . U also had a bladder scan that showed 300 ml after emptying . I was fit with a Splint and sent on my way . I was seen by my neurologist follow up again 4 months later who then said there’s nothing much they can do and maybe some neurophysiological testing should be done . I said are u sure my problems are not down to heart problems as I keep getting heart flutters blue feet . Hands . Lips . He said no there’s no way … I was then discharged from the neurologist clinics The heart flutters was starting to concern me so I braced myself and went to see my gp I was so scared as I never know how he was going to react . I told him I keep getting flutters in my chest and my lips keep going blue . He said well you are not dead yet so it can’t be that bad … He checked my blood pressure and pulse . Pulse was slightly high which I though was strange I usually have low pulse in the 50s . . I saw a cardiologist explain to him the butterfly’s in my chest he said ok let’s do a 24 hour holti monitor . I was fitted with one and sent home I have the monitor back 24 hours later . I received a letter a week later saying the results are good there was only one ectopic beat found and will now discharge you and put u back into the care of your gp … I was then seen again in the psychological department . I saw doctor he asked me questions . No I don’t have anxiety no I don’t have depression I said look I just feel my brain isn’t getting messages properly and maybe it was my heart … He did my blood pressure he said no that’s fine . October 2013 I was then neurophysiological testing . This was 8 hours of tests in 2 appt periods . The test concluded that i had memory and concentration problems and fine motor skill weakness I was told it seemed like a developmental problem … I was then just left to struggle through life with more challenging medical issues … I was cold all the time hand feet legs I now struggled to concentrate I get a ringing in my ear . I’m constantly thirsty but as soon as I drink I need to empty straight away . My skin is so so dry . My tremors in head and arms seem to be getting worse and my walking is not getting better . I’m now struggling to use my hands to lift a cup to eat I can not cook anymore .speech is bad and concentration and memory are just getting worse . I moved to another go practice as I needed to talk to a doctor but was so scared of my own gp . I’m so glad I did . December 2013. I went tonmy new doctors I saw a lady doctor but I think she was covering I explained look I just can not sleep anymore I just need one nights decent sleep . She asked me why. I said well the tremors in the night are bad my brain just won’t relax … She said I think u need to see psychologist . I said I really don’t I just need a few good nights sleep . She sent me away with 3 nights worth of tablets and I was so thankful for just the one decent nights sleep never mind 3 night . We took our children away to see there nana in Malta for Christmas and new year . I spent most my time in bed as my body was just so exhausted from trying to walk and trying to be that mother I should be to my children February 2014 I was struggling to get out of bed or even lift my head I was dizzy all the time I never felt so drained in my life . My friend said u must go back and see the gp I said what for I just need to ride it out there’s nothing no one can do for me . In the end she made a appt and took me to see my gp he greeted me with a lovely smile and I felt instantly at ease . I explained that I keep feeling dizzy when I stand my body was having tremors I couldn’t concentrate at all. He took my blood pressure and pulse rate . I said no no it when I try and stand and walk I get dizzy. He then got me to stand and repeated the test. He asked his nurse to do a ECG . I went and had that done and went back in to see him . He said he would like some bloods doing and wants to put me on medication but would like the blood results back first before he can give me the medication . Also to refer me to a cardiologist . I explained I have already seen one last year he looked on the computer .then shook his head . He said he thinks maybe I need to be seen again. I had my bloods done and waited a few days and went back to see him . He said bloods seem ok you are just very low on vitamin d so he gave me some vitamin d tablets . He explained he wanted to put me on propranolol to lower my heart rate . I said it should be low he it’s ok the 100s bpm I said that’s weird I know my resting heart rate is between 50/55bpm . I took the propranolol and stated to feel a little better no chest pain no fluttering . I then saw a cardiologist she checked me out and asked my symptoms I told her dizzy when standing thumps in my chest . She said I will receive appointments for some tests . 23/April /2014 I had the tilt table test don’t . Baseline bp 168/98 pulse 110 regular . Prior to to tilting heart rate was already 118 bpm I was tilted 70 degrees vertically the heart eat immediately picked up to 140 bpm and I was feeling very dizzy . Symptoms lasted. 3 min and improvement to my tachycardia . I had 2 sprays of gtn this resulted In reflex tachycardia 130 bpm . At 4 min I started to feel warm and unwell I complained of feeling dizzy . Bp by this time dropped from systolic 160 to 110 . Then thr bp continued to drop rapidly with blurred vision and then I finally passed out with a nadir bp of 54/38 there was some bradycardia 65 bpm … My conclusion and diagnosis to this is . Postural orthostatic tachycardia syndrome and vasodepresdor neuro cardiogenic syncope … I’m hoping one day I can get the right diagnosis that coves all of my Symptoms so I can learn to fully understand myself and why I am like the way I am . It’s hard to try and explain to people that my brain just isn’t working correctly Worst everyday challenges are the spasticity in the leg hands don’t work well causing fine motor skill problems . Urine urgency with some retention In the evening tremors in head arms and hands and legs . Speech problems . And cognitive impairment … I am thank full to whoever has spent the time and sat and read this long story of my medical journey and challenged I’ve been facing over the last 5 years … … Aids I use is a walking crutch and a electric wheelchair .
Aw Hun, what a horrible time you’ve had. We can all sympathise with you. I’m sure that MS helpline would help and listen. Also, I’m quite new here and I’m still in the ’ let’s see if you have more lesions before we start treatment’ stage :s there are lots of brilliant people on here who have been through this and know a lot more than I do, so I’m sure they will talk to you when they see your message. Big hugs to you Hun xxxx
Awwww BIG HUGS AND KISSES TO YOU.
I pray that you get well soon
Hello and welcome.
You have literally been pushed from pillar to post. I really feel for you. I have never heard of that condition. I have been running between doctors and as yet have no real diagnosis.
Are you getting the appropriate help now?
What an horrndous time you have been through, so frustrating when you are constantly having, what seems like, your own sanity put into doubt. I have read about POTS on here before, and someone wih thought it was ms redirecting a dx of this. Hopefully, you will start getting the treatment and support you thoroughly deserve. Massive (((hugs))) J x
Hi I really feel for you, I felt wvery word that you typed. All we want is to be taken seriously. This well you don’t fit the ‘normal criteria’ so therefore you can’t have ms or any other illness really frustrates me. I don’t mind so much about what the diagnosis is but that it is right. Is this diagnosis it for you now and how are they treating it? Be patient, do what they say and if there is no improvement don’t be afraid to say. Lou x