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my gp thinks im a hypochondriac

hello,

ive turned to this page as im starting to feel like no one is listening!

I havent been diagnosed with ms but everyday that goes on i continue to think it is and i know it can be a number of other things but i still continue to think its ms. Let me start by sharing my symptoms from start to present.

first thing was a crawling sensation in my ear which dosent go away and i still have this daily. This started the beginning of last year (2018). I was referred to ent. When I eventually when I saw ent, I was going through symptoms which have now been diagnosed as migraine related. Symptoms which started as a migraine, then i lost vision in my left eye, then had numbness in left arm. I went to a n e with a suspected stroke. They gave me a CT scan and MRI. Sending me home without nothing wrong. After this the symptoms persisted. I had waves of numbness moving all over my body, tingling, pin and needles, chills in my hands like i had electric currents running through, extreme tiredness, burning and stabbing pains. Then I got a call back from my gp that there was white matter on my MRI and I was being reffered to a neurologist. When attending my ent appointment i explained all that was going on and he came up with the diagnoses that due to all the symptoms I was having, along with the white matter that the crawling sensation in my ear is a variation on the Ihermittes sign which would suggest a diagnosis of ms. Although, when I eventually saw a neurologist I was my usual self, everything had gone back to normal and they said it was not ms, and the white matter was due to migraines.

Since this I have been checked out for thyriod problems and rheumatiod arthritis which it isnt. I noticed that when I have an on set of symptoms, its brought on through stress. Im currently on my third set of symptoms. Ive been told not to call it a ‘flare up’ because them im assuming to people that i have something wrong with me! by the stroke doctor who i saw from the start, as Ive seen him recently in a follow up appointment. In my sets of symptoms im noticing my right wrist/arm is weaker. This is started in my second set of symptoms and feels weaker into my third. Ive also had finger and leg twitching on my right side, dizzy spells, itchy skin, numbness on right side of body with migraine, pain moving all around my body, like dull aches, which is a regular thing. Electric shock feelings at the bottom of my spine. Night sweats. Pain at the top of back and down right side of neck. Random numbness and pin and needles in different parts of my face. My joints feel loose sometimes. Ive also had a swollen finger and a swollen knee.

Today I visited my doctor to be referred to a neurologist again, as thats what the stroke doctor suggested. (getting a second opinion if it carrys on) only to find that he suggested me seeking independent neurologist. My gp wont me refer me again saying youve had an MRI, and she said ‘I think its hypochondriacal’ … I will not be seeing this doctor again!!!

I seeing a rheumatogist next week on my second appointment, as there was one point where I thought it was fibromyalgia but she not convinced its that either.

Can anyone suggest what I should do next? apart from finding a new GP lol

Hiya Greeneyedgirl,

First of all saying its Hypo is a get-out for some doctors; because basically Neurology is a relatively new science and they are basically impotent. After all MS (if it is) was only discovered by Charcot in 1868 and it’s only since 2001; with the introduction of DMDs had they had any real beneficial treatment?

Here is an account; written by a doctor about his diagnosis; Diagnosing Multiple Sclerosis I think you will see the similarity with your case.

Also; just in case ask them to check for APD antibodies or Sticky-Blood. This is a complaint that mimics MS symptoms but can cause very bad; constant migraines. http://aps-support.org.uk/

I know this sounds costly; but you could go private for about £300 for your initial appointment with a Neuro of your choice? All further appointments, drugs and hospitalisation have on the NHS, this is perfectly legal.

Don’t jump out the frying pan and ask on here if anyone recommends a Neuro in your area.

Good luck.

George

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Hello

I’m a bit confused. Lhermitte’s doesn’t normally present as you’ve described it. See https://www.mstrust.org.uk/a-z/lhermittes-sign

And why would an ENT doctor diagnose MS? Generally only a neurologist can make a diagnosis of MS. And the neurologist you saw had access to your MRI, and I presume went through your medical history and gave you a physical examination, yet thought it was not MS.

Just because your symptoms had died down at the time you saw the neurologist, it doesn’t mean you wouldn’t have the reflex reactions and other typical signs of a neurological disorder. I assume you didn’t have these responses, which is why the doctor declared that your symptoms and white spots on MRI were the result of migraine, not MS.

To be honest, your neurologist may well be right. That however, doesn’t mean you are not experiencing these symptoms. I can see why you wanted to be re-referred to neurology. Is there another doctor in your GP practice who you could see? It does sound like you have been, or are being, tested for the answer to what is going on with your body, but perhaps even just for your own peace of mind, you need to see a neurologist to be absolutely certain that it’s not a neurological problem.

If you did end up needing to pay for a private appointment with a neurologist (if funds allow), you should try to get a copy of your MRI on CD from the hospital. You’re likely to have to pay for it, but it should be possible, and that way the private neuro would have some clinical evidence to consider.

Best of luck.

Sue

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Hi George,

thank you for your message. I think I may have to seek to see another neurologist and pay privately. What you said about paying private for consultation and then all further appointments going through nhs I’ve already done this to see a rheumatologist. So I may just continue with the rheumatologist and see where that brings me. Then consider doing this for neurologist, if I don’t get any answers from the rheumatologist.

thanks again.

Tracy

Hi Sue,

thank you you for your message. Yes I too was completely confused with how the ent doctor thinks the Lhermitte sign is linked to my crawling ear symptom, as I’ve already had a read about it and I don’t see how it can be connected. Also, the ent doctor suggesting a diagnosis of ms completely had me in shock also. I thought at the time, surely he’s not allowed to make that assumption.

Like you mentioned I do still feel like I need answers, so maybe a new doctor or seeking a private neurologist are my options for now. Thanks for letting me know I might be able to get a copy of my MRI also.

Thanks again,

Tracy