Unsure - needing answers - awaiting dx

New diagnosis and before diagnosis
1

Just curious because all these issues are driving me insane…

I am awaiting an appointment with MS Neuro specialist on Jan 5. I was dx with fibro about 11 years ago. This past summer hit me fairly hard. The biggest issue was fatigue and leg/arm pain/weakness. It was to the point where the pain was intense I was almost in tears, then so weak I could hardly walk. I haven’t seen a real neurologist since I left Colorado in 2006. I had an Mri in 2006 which didn’t really show anything other than a pineal cyst. I recently demanded another Mri in October which showed some intensity of the parietal, cerebral volume loss, along with pineal tumor (the cyst has grown in size.)

My GP had ordered blood work which showed a deficiency in both vitamin D and B12. I work in the sun daily and live on the east coast, so sun exposure is not an issue for me. I am not a vegetarian either. Just wondering if anyone else had the same issues before being diagnosed.

Main issues are - numbness/weakness in both legs/arms - pain behind my eyes - migraines - extreme fatigue and recently have found that I get lost or am very forgetful easily - an itchy areas on my skin. 45 year old female that works outdoors and walks all the time until recently. I have always been one to stay active, yet now it is affecting my job and social/home status this past year. Vitamin D was at 18 and B12 at 185. Also had high lymph counts at 3.2.

Thanks in advance!!!

2

Hi Beachbum

From personal experience, the low Vitamin D could be playing havoc with your ability to concentrate and your memory - having low Vit.D in the UK at the end of winter is not that uncommon, but mine was lower than low so I was started on 3,200 iU’s D3 per day for a few months to get my D levels up to somewhere near normal - concentration/memory showed improvement very quickly (for me). I now take 800 iU per day to keep things on track. My B12 levels were OK - so can’t comment on that one.

I have itchy patches too - in my case due to eczema, both ms and eczema are inflammatory auto-immune conditions (I also have asthma - another inflammatory a/i condition - unfortunately no prizes for getting 3 in a row).

Your Neuro Specialist will be better placed to advise on your latest test results.

Sorry not to have any real answers for you.

3

Hi, beachbum , i hope that you get some answers on the 5th of January,its seems as if it can take along time to get answers, i suffer from weakness in both arms and legs the legs are the worst and i need a wheelchair to go out anywhere. i have low iron and low vit D not sure if its connected, it so hard being patient and waiting for answers, i hope that you get the help you need.