Hi all, new here and lost & confused

[erykah71]

Hi everyone,

I have joined the forum, because I am getting no answers from my GP and am starting to doubt my own mind so am hoping for some help, advice, views and whatever else I can get to prove I am not going out of my mind.............

I have just been diagnosed with Fibromyalgia after 4 months off work with depression (had to reduce hours from 37 to 16 when I went back) and months of being told my illness was depression and to take paracetamol for pain.

I was grateful/relieved for a diagnosis after GPs dismissing I had anything other than depression & IBS. BUT........

When I mentioned to a colleague at work that I had been diagnosed with Fibro, he said that his sister had been misdiagnosed with that and she actually had MS.

This worried me, (although I had not considered it before) because my Nan had MS. I have read a host of sites, some say it's not genetic, some say it is, some say it's possible?

My GP surgery is not the greatest and 2 out of 3 doctors seen have suggested my pain is psychological, hence the doubt in my mind.

I know that the symptoms of Fibro and MS can be very similar but I am experiencing symptoms of both and am not sure what to do next as I feel if I bring up my worries to GP they will just discredit my questions. (I asked a few months ago if my extreme tiredness could be contributed to diabetes as my mum had it and was told, 'snort' let's not make our own diagnosis and wait for blood results'????

As I've learned, both illnesses can not be diagnosed with blood tests and I have an appointment at the end of the month with the sleep clinic but I am seriously going nuts trying to work out what's wrong.

My symptoms are:

Extreme fatigue..... I have been going to bed at 9.30pm and struggling to get up at 7.30am, feeling shattered throughout the day, everyday

Stiffness and cramps........... It can take me upto 45 mins to get up of a morning due to pain (mostly in my ankles) I also get regular cramps (mostly in calfs) but sometimes in toes and foot

Pain....................... Arms, legs, hips, back, shoulders..........for example, I can't talk on the phone more than 5 mins without my arms aching. Have had pain when standing and walking in ankle and heels for over a year, I can't walk too far without feeling exhausted (no breathlessness just achy) Knees often buckle, Hip aches, wakes me up regularly. I can't carry shopping, and I often have to get taxi to/from work

Dizziness.............. Sometimes on standing, or if i look behind me whilst walking (i.e looking for bus) I feel dizzy when I turn back around and this causes me to wobble

IBS........................ I have an urgency with bowel movements, whether diarrhoea or constipation i feel an urgency to go I regularly have accidents, both at home and out

Sensitivity............... Bright daylight (not necessarily sunshine) Loud TV hurts my ears, I have a large TV but have to squint to read words due to blurriness

Vision............. Not too bad apart from blurry vision as mentioned above

Periods.............. I have had the Mirena coil since 2000 (after the birth of my last baby) and have not had a period since then until 4 months ago....Also had an abnormal smear result and had to have a colposcopy (waiting on resutls) Bleeding is light and lasts a day, but have all the abdominal pains of a period (I am 43 by the way)

Mind............. I only work 16 hours a week now (9-1 over 4 days) and yes my job is demanding/stressful to a degree, but after about an 1 1/2-2 hours my mind seems to turn to mush

Depression/anxiety.....Have suffered with this for years so not sure how to relate it

Headaches...........Have had many over the past few months but other pains outweigh them

Exercise............ Is a nogo zone. I go food shopping once a week and am exhausted for up to 48 hours after

Numbness.............Often get pins and needles in fingers and hands also get extremely cold

GP has prescribed codine and naproxen for pain and also steraline (anti-depressant). Pain does not go away, but I feel more relaxed. However, since starting these I am experiencing insomnia, dry mouth, itching and restlessness.........

So anyway, after all that, I guess I am asking, is there a chance this is MS rather than Fibromyalgia? (especially as my Nan had it?)

Thanks guys, sorry for the long post (and maybe tmi) but wanted to get as much as I could out there.

[lyndacarol]

Hi and welcome to ThisIsMS, erykah71.

First of all, you are NOT going out of your mind! Your symptoms are real and common to many conditions, which must be ruled out first before an MS diagnosis can be considered. Many conditions have an element of heredity – if your grandmother had MS, you may be at a slightly greater risk of also having MS. BUT other conditions can run in families too – for instance, vitamin B12 deficiency can run in families… and EVERY ONE of your symptoms (including an abnormal Pap smear) is also consistent with B12 deficiency.

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Dr. Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/

In fact, thoroughly investigate all the tabs, links, and videos at the website.

If you are in the UK, the following website may have special interest for you: http://www.b12d.org/

In my opinion (I have no medical background), I think B12 deficiency is the FIRST possibility that should be investigated THOROUGHLY with #1 a serum HoloTranscobalamin test (this is newer, more accurate, and preferred to the old "serum B12"), #2 RBC folate test, #3 a serum homocysteine test, and #4 a serum (or the more accurate urinary form) methylmalonic acid test. Do NOT take vitamin B supplements at least 2 weeks before testing, as this will skew test results.

Since you asked for "… advice, views, and whatever else…," I have offered you mine. We wish you all the best; please let us know how it goes.

[Scott1]

Hi,

At a bare minimum, you have enough symptoms to warrant an investigation for MS. Ask for a referral to a neurologist for an investigation. Who made the fibromyalgia diagnosis? They may have a logical reason for ruling out MS (and they may not).
Your GP doesn't sound like the answer for your problems. I would find another.
There are many ideas on this forum but always look for facts. The first fact you need to establish is whether you have the right diagnosis. There are tests that a neurologist is qualified to conduct. Start there. Not with talk of depression and pain because they are subjective assessments. Feelings are real so I don't discount them but certainty is more helpful than wondering. Change doctors, if necessary, and see a neurologist.
Regards

[ElliotB]

A GP is not a specialist. See a neurologist who specializes in MS who is well trained to deal with your kind of situation.