Sorry David, my laptop has been broken and I've only just reliased I missed you reply. I had testing for MS in 2008 but it was ruled out after having a normal brain scan and was just treated for the symptoms until recently. I went to London to see an EM specialist, I spoke to him about the other symptoms i had that were not related to EM and he referred me for a brain/spine scan, genetic testing, skin biopsy and loads of bloods. Sadly he moved hospitals shortly after and before my results were back and the person who was meant to take over my case never reviewed my results. It took me 16 months of fighting, countless letters from my pain management specialists and my GP and then the original specialist emailing them before they found the results buried in my files. They mistakenly sent me the clinical findings instead of sending them to my consultant or GP. The results said that I had 11 white matter lesions on my brain consistent with demylenation (sp) and satify the McDonald criteria for Multiple Sclerosis. This letter I got a 6.30pm after work and left me devastated and unable to talk to anybody from the medical field. I then waited months to see a Specialist MS Neurologist. I am having a Lumbar Puncture on Wednesday but not sure why this is necesary because when asked if it likely to be anything else he said no it's def MS. It has been a long hard battle and now in hindsight I wish I had kept on at my GP about putting my whole list of symptoms together instead of seeing them and treating them as all individual problems, i do think I'd prob got a quicker DX if I had. I notice you mentioned RSD, I was dx with this after I broke a bone in my foot, the break healed but the excruciating pain lasted for about a year. Have you had an injury that started about the same time as symptoms.?
dkel9307 said:
Hi Lauraflora
I am going through extensive diagnosis at present with specialists who are trying to see what else is going on with me, in addition to EM and chronic venous insufficiency. Candidates include myeloproliferative diseases, cancer, sarcoidosis, mastocytosis, systemic lupus erythromatosis, reflex sympathetic dystophy, neuropathic disorders and others. I also got diagnosed with left ventricle non-compaction in my heart last week.
I would be very interested to understand how long it took for you to be diagnosed with MS and small fibre neurpothy.
Thanks
David
lauraflora1 said:My EM started off with just pins and needles a few months before the swelling and burning. It was just in my toe to start with but I now feel like I have millions of tiny insects crawling under my skin. I also get muscle fatigue and pain but have recently been diagnosed with small fibre neuropathy and multiple sclerosis so not sure what's the EM and what's other diagnosis.! Maybe make a log of symptoms that you can take to drs with you to give them the bigger picture.