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Need some advice please !

Hi

A family member recently diagnosed with MS told me to come here for some advice, she feels my symptoms are the exact same as she just went through for 3 years before getting her MS diagnosis.

Basically I started having symptoms 4 years that no doctor seems to be able to explain. I have now been in hospital twice over the 4 years, both times for over a week having tests done & they keep telling me everything is clear.

When it first happened to me, they done a brain MRI & told me I had a vascular loop in the brain & sent me home, sending me for a follow up appointment to another hospital, but by the time I got there as everything takes so long, them doctors told me the vascular loop would not cause any of these symptoms but the symptoms had gone by then so it was just left.

My latest episode started on the 19th May and has not left at all, I am beyond frustrated not getting any answers from the hospital & the neurologists are making me feel like I am going insane & its all in my head.

These are the symptoms and how they start: tiredness followed by heaviness in the arms & legs, a numbness tingly sensation in the legs and this unbareable exhaustion, sleeping most of the day. Since being home from the hospital I have also lost color in my legs and feet they are totally transparent at times, my breathing has been bad some days , walking down the stairs never mind up them can leave me gasping for breathe, as much as lifting a kettle of water is too heavy, lifting a laptop is too heavy and I have a burning pain every time I move my arms and legs. I can do very little without having to stop and wait for a few moments, and as much as popping to the shop or a doctors appointment can completely wipe me out leaving me back in bed for a few hours to try regain some strength. I get alot of burning in my feet which also only started 2 weeks ago.

In the lastest tests I had done this time, they are reporting a shadow on my lung CT which they suspect is nothing & they are repeating scan in 6 months, on my Brain MRI they reported a single juxtacortical lesion noted in the right frontal lobe, my potassium was low but is now fine, my cholesterol was high which is now fine, they gave me 6 injections of Vitamin B12 over 2 weeks but the level was only borderline normal/low it was not that low & they have me on Vitamin D, and in the latest bloods its showing my blood cells are struggling to hold onto the iron and they want me to take iron supplements, but they dont think any of the above would cause my symptoms.

Can anyone help me, is there any neurology condition anyone has that they experienced these symptoms, I am now almost 8 weeks like this & I am getting beyond frustrated. Before this happened I was walking 10km’s a day, going to work, being the normal busy body I was, and now even as much as holding a pen is difficult for me. My memory is absolutely shocking too when it is usually great, these weakness does be so strong at times I really have to struggle to even get words out of my mouth!

Does anyone have any suggestions on what I can do next, or anything I can do myself to give me some energy & strength. I miss work, I miss just having the energy in my body to get up and do the normal everyday things! The hospital have now fobbed me off from one neurologist to another, who I met yesterday & her plan for now is for me to do some physio & see a neurophyscologist, again you hear physcologist & it makes you feel like this is all in your head and they are sending you to see a shrink! These symptoms are not in my head, they are very much real. There has to be something causing it!

They have also mentioned this being a functional neurological condition but did not go into much detail

What can I do??

Frustated beyond words!

hi

whatever is causing your symptoms needs to be dealt with.

you’re not going mad, its a common feeling when awaiting a diagnosis.

i even felt relieved when told that i had ms!

tina (anitra) knows a lot about other conditions which can mimic ms, such as Lymes.

maybe try posting again with “Anitra - please help” as the title.

good luck

carole x