It’s been an interesting few years actually. After having my kids and working night shift I was having frequent headaches and just not feeling right in the head. Lack of sleep was always the culprit. But I had a CT with contrast to make sure all was well. During that time I was also feeling weird tingling on one side of my body which they attributed to pinched nurses. CT normal, move on with my life. The following year the tingling returned more one sided, majority of the time just the foot and hand. But it would come and go. I also noticed arthritic pain in my hands and feet. Changed my shoes and of course it got better. Then I’d have achy pain along the sides of my legs (IT BAND) but then again it comes and goes. 2 years this tingling pins and needles episode lasted for a few weeks. Didn’t affect my daily life I can lift run and workout. No change in strength. I went to the ER scared I was having a stroke or something and they just did labs and some sensory testing all was well. Symptoms went away. Last year with all the stress of Covid I started noticing I was having intermittent twitching all over my body. The tingling wasn’t a problem at that time. I went to make a Neuro appt finally who did some lab work, EMG and Nerve conduction testing. All labs were normal along with the nerve testing except for anti-Mag antibodies was high. He didn’t seem concerned but said that could be causing my neuropathy even though nerve conduction ruled me out for nerve damage. When the tingling symptoms returned 4 months later he ordered additional labs. Serum electrophoresis, protein, Kap and lamda light which all were normal. Symptoma once again subsided. Right before my follow up about 4 months later low and behold the tingling is back, cramping in hands, new symptoms an intermittent internal vibration in one specific part of my foot. This past week I also feel that when I lay down to sleep I feel the vibration in my head. But stops as soon as I change position or stand up. I went to my Neuro appt and went through the assessment and he once again told me that he feels it’s feom this antibody. He just said we can treat the symptoms if you want. I’d rather not if I don’t have to but if this stops progression of some kind of course I’d be interested in hearing more options. I asked about MS because of its flare and symptoms. He said it would be “weird” if you had MS and this antibody as your cause of symptoms but you can do an MRI. He wouldn’t have offered it to me unless I mentioned MS. I’ve researched MGUS which could be a precursor to MUltiple myeloma cause by the anti-Mag antibodies but he hasn’t mentioned it either. I’m just scared. Am I advocating for myself enough? He obviously knows what he’s doing more than I do but I feel the communication isn’t happening to put me at ease. Anyone have these symptoms or tests done? I have my MRI at the end of the month which I know will tell more but been digging myself into a rabbit hole here. Thanks for listening!
Hello, you don’t seem to have had a reply, just as I haven’t to a post I made earlier. Like you I don’t have a diagnosis yet and I am very scared as well for what it will mean. You have been through such a lot and have not yet got a diagnosis and I can’t imagine how that must feel. I would be honest with the specialist and tell him how you feel about communication. He may not know he’s doing this. I’m sure other people with far more experience than me will be along to reply to you soon, but I am sad that this forum is not as active as I thought it would be.
Can I suggest you join the MS UK group on Facebook? There are so many knowledgeable and lovely people on there. This part of the forum doesn’t seem very active. Lots of people will reply and they’re so generous with their time.