hi there,

nice to meet u all

here's my brief story

went to my gp with symptoms of numb/tingling hands and feet,bladder/bowel problems,memory problems,walking difficulties, to name a few....
GP referred me to a neuro who on examinaton thought i had possible PPMS.
I had a neck/head MRI, VEP's, and an LP, all came back clear.His DX was Funcional Neurological Problems and i was told there was nothing more he could do and signed me off.

where do i go from here?


Kiz :-)

Hi and welcome kizziwizz. (love the name) the health care in the UK is different from USA. If you were here, I would reccomend that you be sent to a new neuro and or an MS center for re evaluation. Since I am struggling to understand Canadian healthcare, I would be in trouble to say I understand UK stuff.

Do you have MS clinics? Can your primary MD send you?
Do you have the right to call any neuro you want and ask to be seen, or must you be sent by your MD? if so, start researching neuros towards a larger city. Close to a hospital. Call the big city hospital if you have to and ask who their head neuro is. Ask if they have an MS clinic. Ask how you go about getting in to see this neuro or clinic.

Keep records! I know your MD says they will keep track for you, but all you need is one missed spinal tap result and you may end up repeating it.

Keep a symptom journal. Make it part of a brief daily diary. Put in if your muscle are stiff, sore, headachy, back ache stuff and what relieves it if anything. Include your fatigue level. Make a grid of 1 to 10 and each day rate yourself. Today fatigue is a 3 and next day is a 2 and next day a 7. This will give a good idea to who sees you what your patterns are. I use a wall calendar with big blocks to write my stuff down. this way its easy to see and remember.

Contact the Multiple Sclerosis society for your area or region. they have a ton of information.

Remember there are a boat load of things that can cause MS style symptoms including the lesions, so be sure you regular MD checks that out. vitamin def, lyme, lupus, and so forth. Tons can be ruled out with blood work. Then they start shifting thru the pile of whats left that cant be proven.

Hang in there.

can't add any more direction that what dej just said. It is tough to live in Limboland. An answer is better than the nothing you have here but symptoms.

But for what it is worth, I do not take any medications other than things to deal with my symptoms.

Hi Kizziwizz, welcome to our neck of the woods. I hope you can get in to see an MS specialist for a second opinion.

I hate when Docs write off a Patient's Illness, because he's too dense to investigaye and learn. The least he/she could do is send you to someone who does.

Hi Kizziwizz - love this name! How does your health system run in UK? Like America or Canada? Look at your medical hospitals or medical schools for professors/specialists who specialize in MG. Review their biographies. If possible go to visit a professor with your questions and seek his counsel or go to a hospital with appointment to see a doctor specializing in MG.
Let us know what is available for you in UK- I'll go look myself too for you

Hi and welcome to NeuroTalk! I hope you can get a second opinion.....and from a doctor who knows what he's talking about! Some docs are just too proud to admit that they don't know. At that point they should refer you to a specialist.

It's so hard to know there's something wrong yet be dismissed as though it's not really important. I wish you the best.

Hi Kiz,
Welcome to NT.
What I think is:
You may have to wait until more symptoms occur. I know it's hard to get a dx in the UK, especially with clear testing. I never heard of "Functional Neurological Problems."

He is stating you do have problems, so why can't he give you medications at least for the symptoms? How about seeing a MS nurse? Will your MD refer you? If you have anymore difficulties you should go to the ER (hospital) and maybe then you will see a specialist to sort out these problems.

I know your waiting lists are long, I have friends in the UK. Good luck to you and nice to meet you.

http://psy.psychiatryonline.org/cgi/.../full/48/3/230
it would seem he is saying that it is all in your head....

It sure does, the Twit.

Oh, goody. A study with all the scientific and medical jargon to disguise the old, tired, and abusive "it's all in your head" diagnosis. Why can't they just admit they don't know everything, instead of blaming it on the patient?