Help? Waiting for answers

New diagnosis and before diagnosis
1

Hi all,

I hope you are well, this is the first time I have posted on a forum so apologies if I get anything wrong. I am reaching out as I am in the midst of the long investigation process of getting to the bottom of my symptoms. I understand the NHS is doing the best it can, whilst beind underfunded and oversubscribed. I am getting frustrated and feeling low due to the symptons experienced and having to manage them in the weeks/months between appointments.

I am a 41yr old female, happily married with two daughters 12yrs+10yrs. I am non smoker, non drinker but am overweight (dress size 24). My symptoms began after having my first daughter 12yrs ago, I suffered severe fatigue but this was put d own to an underactive thyroid of which I take daily thyroxine to control. I have never felt the same since, after having my second daughter I was diagnosed by my gp as having CFS, although no tests were made. Since having my daughters, I have always worked part-time in home based roles as I have fatigue daily and need to work around it. In the last few years other symptoms have appeared, e.g feeling intense cold, sweating facially when hot, poor hearing, poor sense of smell, migraines, weak arms and legs, restless legs, itching all over, pins and needles in hands (sometimes feet), frequent urination, memory loss and feeling foggy, electric shock feeling on face, nausea.

I have had a full back MRI and brain MRI, brain was clear but back showed possible areas of foci suspicious of demylination however could be artifact. so I am having another back MRI with contrast 9th Mar, then appointment to see consultant five weeks after that.

I feel a bit in limbo at the moment and dont have a great deal of confidence with the nuerologist I have as they have aldready made a few mistakes (had origonal MRI in NOV 19, neurologist is still not recipet of images and is doing his follow up work based on the radiologists report) and feel a bit invisible.

Has anyone had a similar path to me? Do my symptoms sound like MS or more like something else?

Thank you in advance for your support

Xxx

2

Hello happy mom, I can totally relate. I am in limbo too. I also like you have been having symptoms for years. I think it’s hard not to get anxious about waiting and even more difficult when you are battling all your symptoms along with family life. I think you may need to call your neurologists secretary to find out where the MRI results are from November. Many people have to wait years and even decade’s for a diagnoses ( if it is MS). I know what you mean about having no confidence with the neurologist (I just asked for a new one after 13 years). I will in box you. Lina

3

Hi, your symptoms could well be MS…but there are around 350 known neurological problems, and many mimic MS. As Lina says, it can take a long time to diagnose many conditions. It took 22 for mine! Way back in the very late 90s, I had dropped for, falls, bladder/bowel accidents, leg stiffness/spasms and fatigue. I presented as typical PPMS…but many tests proved nothing. I became a full time wheelchair user within 2 years. Only last December, I saw a neuro (no 17) at a specialist neuro centre and was diagnosed with PP Spinal MS. My brain is clear of lesions, but I have a significant amount on my spine. I hope you get your diagnosis soon. Boudsx