complain or not to complain

[robir007]

Hi can anyone help me with my story I will try and be as short as possible .I became unwell around 5 years ago after the birth of my son. At first my GP diagnosed depression and IBS (I did not feel depressed just unwell ).I had lots of symptoms ranging from muscle cramps ,numbness, tingling ,clumsy lots of falls my balance poor ,vertigo ,incontinence, memory issues etc. I could not even walk upstairs and the fatigue was overwhelming also had lots of sinus problems which I never suffered from before antibiotics never cleared it up I was referred to ENT but CT scan was fine .He then referred me to a neurologist
By this time I had been off work sick for a year

At this my GP now suspected MS. When I finally got to see a neurologist (2010) he said migraine can cause all the symptoms but sent me for MRI also sent me for nerve conduction studies. Ataxia of gait was noted Reflex's were suppressed and reduce sensations in the hands up to palms and reduced sensation to pinprick and reduced temperature up to knees he thought maybe peripheral neuropathy as well but that was clear .I waited 8 weeks for MRI report I was finally told over the phone it was reported normal

My GP also referred me to a urologist I had a urodynamic test done which showed I could not feel when my bladder is full its not empting fully and stress incontinence

I had several trips to AE during this period not being able to walk in a straight line everyone thinking I was drunk one visit I saw registrar who thought I had POTS the tachycardia was new to me an i had only just started to notice these new symptoms this was in September 2010 he said he would speak to my neurologist to get a referral to London to see professor Matthias .I explained to him that I was not seeing my neurologist until February he said he would send all information to him immediately

February 2011 my neurologist appointment he had not even opened my file responded to calls or emails even though I was deteriorating the register had also left notes for him he still suspected migraine but did the referral to London at my request .My GP was unhappy about this and said I should make a complaint so I did

To cut along story short I was diagnosed in London with POTS and hypermobility syndrome (2012) but because I had ataxia they sent me fro MRI .My MRI showed a couple of lesions in the frontal lobes. A few weeks after that MRI I developed another sinus infection which lasted 7 weeks no antibiotics would clear it up until one night my head hurt so much I could not move and my eye started to swell I had sciatica feeling down my leg and could not drink as my mouth would not go around the cup could not even tell what was left and right . I was admitted to hospital for 2 days and secluded for MRI but the swelling went down so they did not bother nor did they take account of my other symptoms. Still in pain I phoned the ENT back he told me to come in the next day and he requested an MRI .
My MRI now showed scattered foci in the frontal and parietal lobes also a blockage In the sinus report stated-ischemia of small vessel disease ? multiple sclerosis .to be correlated clinically

My GP called me in to explained the MRI saying I told you it was MS and its progressing
She referred me back to my neurologist I was very worried as I had made a complaint him .As soon as I walked in he said do you remember me I was the one you made a complaint about after that I felt a bit humiliated he that looked at MRI report and said migraines can do that I and will give you a prescription for aspirin that may help I was in and out within 5 minutes

After that, I thought where do I go from here? complaint did not get me anywhere

Any thoughts would be appreciated Ruth x

[supermum_ms]

Oh boy Ruth, do you need a second opinion! Regardless of if its MS or one of its mimics, I just can't imagine that neurologist is going to be lifting a finger to help you. It might be an idea to ask your 'supportive' GP to write a letter on your behalf, stating your medical tests results, dx from London (?) and his opinion on causation, cant hurt to ask, right?

Migraine is one of the mimics but migraine as far as I know, doesn't typically produce those kind of clinical and diagnostic test results.....

"Ataxia of gait was noted Reflex's were suppressed and reduce sensations in the hands up to palms and reduced sensation to pinprick and reduced temperature up to knees"

"urodynamic test done which showed I could not feel when my bladder is full its not empting fully and stress incontinence"

"diagnosed in London with POTS and hypermobility syndrome (2012) but because I had ataxia they sent me fro MRI"

2010 normal MRI - 2012 MRI showed a couple of lesions in the frontal lobes and later in 2012 the MRI now showed scattered foci in the frontal and parietal lobes.    

I'll go out on a limb and tell you what I really think, the guy's an idiot! If in his opinion he thought his clinical findings, were from migraine and peripheral neuropathy but the nerve conductor tests didn't support it, so his opinion was wrong about what was causing half your problems, he could just as well be twice wrong, because migraine wouldn't account for it 'all'.

I dont know the system in the UK, I'm in Australia which is similar, hopefully some of our British members will see your posts and respond with some helpful tips. Do you think the place in London, might be able to refer you to a neurologist for further investigation, it might be another avenue to try?

Hugs..........JJ

ps please let us know how you get on, i'm sure we'd like to help in anyway we can.  

[robir007]

Thank you all for your support and advice its nice to hear feedback and read other peoples stories. Lots of kindhearted people who have/or face many challenges  .My GP has been a good source of support and she was the one who suggested I complained in the first place .It came after I was so angry after the so called NHS that nearly cost my daughter her life .I should of made a complaint then but I was so glad my daughter was ok plus I was so ill at that time .I have made an appointment to go back to my GP so will go from there. The trouble is when you are a single mum and go alone to appointments you have no one to fight your corner  plus I forget quite a bit that I want to say. I did write things down at a pervious appointment then forgot my note and then when your put on the spot by an unsympathetic health professional it all just goes out the window .

I also had a letter through this morning from my neurologist he's requesting a lumber puncture not looking forward to that but hopefully it will give me some much needed answers

Oh and no one has mentioned mini strokes

Thanks

Ruth x

[Lulu54]

Hi Ruth, and welcome. I am so sorry you are having to work with a doctor who you don't have a good relationship with at this point.  Is there a way to request another neurologist?  I know the NHS and the UK system as so very different than what we have here in the US.  

With the conflicting opinions about your symptoms, I would use that as the basis for your request for the new fresh look.  Good luck -  I hopoe you find some answers.

in the meantime, please come back around - we're good listeners and others might have better suggestions for you.

Laura

[kwarendorf]

Hi Robir - Sorry you're having a tough time of it.

Much of what you describe could certainly be attributed to MS, Unfortunately it can also be attributed to many other things.

You mentioned that one MRI report referred to ischemia. This relates to blood flow, rather than nerve damage. I ain't a doctor, but if 7 weeks worth of antibiotics didn't fix your sinus issue, it ain't an infection. I would think it is more likely related to the ischemia noted in that region.

Has anyone mentioned the possibility of mini strokes to you? This is also blood flow related.

Being in the dog house of an already dismissive neurologist is not a good place to be. Can you see another neurologist? If so, I would keep my symptom discussion to the top three. Let him examine you and ask his questions.

Often, in our attempt to make sure nothing is overlooked, we run the entire gamut of every strange sensation we've ever had. This can cause even a well meaning doc's eyes to glaze over. MS is largely a clinical diagnosis. All of the strange and wonderful tests we're subjected to are just supporting the clinical diagnosis.

I would try to find another neurologist ASAP. Keep us posted.

Kyle