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[louiseerika]

I have just had a set of MRIs which were clear showing no lesions but I have had some problems for over 20 years that are now getting progressively worse.  When researching these I found that I have displayed many of the symptoms listed under MS, under many different websites I compared different health aspects that I have spent many years ignoring as they come and go and never lasted long enough to drive me to a Dr.  I am also perpetually tired but have always blamed this on a busy life, but when I go away to warmer climates for a holiday the heat physically knocks me out and I have written this off as being worn out due to work.  Some of my symptoms that I display are, burning, tingling on my feet at night, itching skin on my arms and legs (behind the knees and on the inside of my arms) no rash and occurs more when tired, alcohol intolerance which displays as diarrhea the following morning, headaches on one side of my head with shooting piercing pain from my eye, jaw pain which feels like I am getting my wisdom teeth (even though I have had them in place for years!) cloudy vision coming and going on one eye (routine test picked up no problem), dizzy spells that can happen when I am sitting, standing for no apparent reason (iron levels are fine and do not have problems with blood sugar levels and also eat well - I enjoy food!), most notably the reason why I sought help is because I get extreme muscle cramps around my hips, thighs and lower back which becomes so intensely painful and locked that I have had traction and physio repeatedly to try to break the spasms.  These muscle spasms are becoming worse and while I have experienced them since I was 12 (dismissed after several xrays as no bone problem and should just "grow out of it" at age 16) they are now taking about 4 months to calm down and in my last bout I also seemed to displace 4 ribs and have no idea how this happened.  I get a tight band of pain (not as painful as my hip/leg/back pain) traveling around my chest at the front at the lower ribs and it feels like a tight feeling like being crushed.  But this week I passed my neuro tests and was joyfully told that I have noting to worry about as I do not have MS as no lesions showed up on the MRI and I can touch my nose with my finger (no spasms or pain currently my last episode ended about 5 weeks ago). All of my symptoms come and go and can last for about a week... with the exception of the muscle spasms which are now lasting for up to 4 months to completely recover.  I am also now getting random muscle twitching in my thighs, abdomen, calves and biceps.  The twitches are new and started in my abdomen which has made me do 3 pregnancy tests in the last year as it feels as strong as a kick from a baby (I have had two so would be able to compare, also have contraceptive that stops periods so I don't have the normal sign that would tell you there was no baby!!!).  My tests have told me that I am normal....   Is it possible that the MRI would miss the lesion or that the lesion would not be present?  I don't really know what to think or what my next step is?  

[thyroidian]

Hi Louise.
I was very much like you, but with a wrong diagnosis of MS.

Illnesses, which resemble MS= Antiphospolipid Syndrome, which i have, and resembles MS TO A TEE.

Lupus and Sjorgens need to be tested for also, as these can resemble symptoms of MS.

Good Luck
Nicola

[louiseerika]

Hi Jellylegs,

Thanks for writing back to me, I don't feel quite so isolated now!!! :)

It sounds like you have had to go through the mill to get a diagnosis.  I have spent a lot of time researching all different symptoms on a multitude of illnesses and MS seems to be the one that fits my symptoms most closely.  

It is very confusing as there are symptoms that seem to cross over from MS/ME/Fibro/CFS.  I guess this is going to be a long road to diagnosis and I will need to be patient.  I have private health cover with work which is lucky as I would not be able to pay for tests otherwise.  

I have managed my symptoms for a lot of years now and I guess I have just been ignoring things as the come & go so when I am fine I almost question my own sanity so I haven't really had the courage to take myself to the doctor.  It seems that being unwell in the traditional sense is when you are sick until healed, not when you miraculously get better and then mysteriously get worse again...!!!  :)

I am now using the symptom tracker to help me build up a picture that I can understand so when I go for my next appointment (come back when you are having your next bout so we can assess you during your pain!) I will be able to better understand what is happening with myself and feel slightly more assured.

I hope that things improve for you as it must be very difficult to not be able to work, it is good that you have the support of your family as this is really important.
Thanks again for the advice
Louise :)  

[jellylegs]

Hi, I'm jellylegs and I'm from Ireland too, when I joined here a couple of years ago I thought I had MS as I have a sister diagnosed for years although my symptoms were totally different to hers but it was my GP that raised the possibility of MS with me when my legs went totally weak and heavy, one worse than the other after a chest infection. She sent me to my local hospital several times but they discharged me repeatedly saying there was nothing wrong. In the space of 6 months I lost everything I lived for, my business(was self-employed in childcare) since my customers had to be at work and I was'nt able to do my job, passtimes and hobbies and some friends and connections all dissapeared into the past. As I was self-employed for years there was no sickpay and I almost lost my home. My diagnosis was a virus/chronic fatigue or timewaster! In desperation I left the public system and went to a private hospital not knowing whether I was insured or not but my brother gave me his credit card and told me to use it if I had too. I was 5 months waiting to see my sister's neurologist and he said there was a possibility it was MS and ordered MRI's, lumber puncture and I.V steroids for 5 days. I could'nt believe the different attitude in comparison to my local hospital, the carefull examination and concern for all over wellbeing where as I had been rushed through and more or less told not to come back. All the tests came back good and he was pretty sure it was not MS and nerve studies done on legs ruled out motor neuron disease but that still meant no diagnosis and not able to work. After a while I started getting joint pain, already had leg and foot pain and the focus shifted to something in the arthritis family and to cut a very long story short I eventually got diagnosed last year with psoriatic arthritis through a private rheumy doctor. The whole saga has cost me thousands of my savings, destroyed my livlihood and broken my spirit. Before all this I was perfectly healthy although I had the psoriasis on my hands and feet for years without knowing what it was but just treated it myself cos I thought it was nothing to worry about. I really dont know what to advise you to do but all I know is it's sad how some doctors do not seem to give a dam as to what happens in our lives but they are all still in well paid jobs and can take a day off with sickpay if need be, you will have to do a lot of the ground work yourself in order to get a diagnosis but unfortunatly it's expensive if going the private route.