Waiting to see a neurologist

[nathalie70]

Hi, I'm a 48 years old woman. A couple of years ago my 2 big toes started getting numb and I was having issues with
my legs and when I talked about this to my family doctor he told me I might have restless leg syndrome. After another year
or numbness and burning pain he started saying that I had Raynaud's Phenomenon. Since I have diabetes he also said it would be peripheral neuropathy but never had be go for some tests. I started having problem with my left eye. I was seeing thing with it and sometimes would lose part of my vision always in the same eye. I started having dizzy spell when going down the stairs. When I get out of the elevator if I stop walking and stay still I start getting dizzy. When I sleep more then 6 to 8 hours I have a hard time walking because my legs get too week and they feel numb and everything feels heavy from waist down. I also have problems with both my hands. Sometimes when I take my coffee cup I drop it because I lose the strength in my forearm. When I lay down in bed at night sometime It feels like somebody is poking me with a needle and I jump. All of these things happening to me are so weird. I don't know if it's MS or my Lupus acting up. I did have a brain MRI and everything is good on my results except this line here:

A tiny left frontoparietal subcortical white matter focus of bright T2 and FLAIR signal without corresponding restricted diffusion signal, non specific and likely insignificant.

I don't know what to think. I have been waiting to see a neurologist since last December and apparently I have to wait another 6 month to a year.

I can't stand the pain anymore.

What does anybody think?

[Scott1]

Hi,

Rather than adding MS to mix I think you have a lot to work with having both diabetes and lupus.

There are things that many of us do that help with MS but lupus is a very different problem. Nevertheless, most diseases have common ground with others.

What do you do already to manage the problems you currently have?

I'm sure the more detail we have the more ideas will will just pop up.

Regards,

[jimmylegs]

hi nathalie and welcome

a few questions if i may, related to pursuit of health

do you have any bloodwork results you are comfortable sharing, in case any of your nominally normal results warrant closer inspection? i am curious about essential nutrient tests in particular.

do you have a daily regimen you can share, including eg foods, meds, supplements, and all fluids?
three days' approximation of typical intake details could help point up any issues potentially related to routine. if you can share that, it's best done in a recipe ingredient format as opposed to menu items.

if applicable, supplement details are also highly relevant eg if you use magnesium, what are the specifics?
eg in my case if i use magnesium over and above food sources, it will generally be magnesium glycinate, 200mg powder capsule and i take it on an empty stomach before food.

how is your daily routine in comparison to general public health recommendations? eg do you adhere to practices like those outlined in the harvard healthy eating plate or similar? https://www.hsph.harvard.edu/nutritions ... ing-plate/

given your situation what are you able to achieve in the way of regular exercise?

[nathalie70]

So far the only thing I take is Ibuprofen to calm the pain. The doctor doesn't want to give me anything
until I see a neurologist.

When I went to see my ophthalmologist while she was doing test in my eyes I started losing vision
in my left eye again. That is why she sent me for a brain MRI. She is the one that thinks I have MS.

I forgot to mention that I also have a lot of cog fog. I also have foot drop and sometime when I walk,
my right foot doesn't always want to follow. It stops and almost makes me trip.

I don't have any good blood work result to show because they only one's I have done are normal test like
cholesterol and glucose.

When I work I have to wear rubber gloves because I don't have any grip. I'm always dropping things.

I have MS in the family on my mother's side.

What is happening to me right now is so weird.

I'm seeing my family doctor again on the 18 so I hope he's going to decide to send me to another neurologist.

[NHE]

An MS MRI usually includes the cervical spine. Did you have this done as well, or just the brain? If you just had the brain imaged, then it's possible that you might have lesions on the spinal cord.

[ElliotB]

Find another neurologist that you can see sooner-you shouldn't have to wait that long, certainly not 6 months.

[nathalie70]

Unfortunately my ophthalmologist didn't ask for spinal MRI. I don't understand how she could forget about this one.

She was so surprised to see what had happened to my eyes when she was examining me that it probably made her forget
to put in down on the requisition.

I'm seeing my family doctor on the 18 and will ask him again to change neurologist. I really can't wait that long.

They will probably have a hard time diagnosing me because of my lupus and lupus and MS have almost the same symptoms.

[jimmylegs]

hi again still curious about a couple of details

do you have a daily regimen you can share, including eg foods, meds, supplements, and all fluids?
three days' approximation of typical intake details could help point up any issues potentially related to routine. if you can share that, it's best done in a recipe ingredient format as opposed to menu items.
...
how is your daily routine in comparison to general public health recommendations? eg do you adhere to practices like those outlined in the harvard healthy eating plate or similar? https://www.hsph.harvard.edu/nutritions ... ing-plate/

given your situation what are you able to achieve in the way of regular exercise?

related recent study excerpts

Dietary intervention and health in patients with systemic lupus erythematosus: A systematic review of the evidence (2018)
https://www.tandfonline.com/doi/abs/10. ... 18.1463966

Conclusions: The studies evidenced that omega-3 supplementation reduced inflammation, disease activity, endothelial dysfunction and oxidative stress; vitamin D supplementation increased serum levels, reduced inflammatory and hemostatic markers; turmeric supplementation reduced proteinuria, hematuria and systolic blood pressure; and low glycaemic index diet caused weight loss and reduced fatigue.

Dietary intake and nutritional status in patients with systemic lupus erythematosus (2018)
https://www.sciencedirect.com/science/a ... 6418301290

SLE patients have an unbalanced diet characterized by low carbohydrate/fiber and high protein/fat intakes. Significant deficiencies were seen in micronutrient intake. Dietary counseling to improve nutrition would therefore be advisable in management of SLE.

Lifestyle in patients with systemic lupus erythematosus and metabolic syndrome. intervention to explore self-knowledge, perception and improvement (2018)
https://ard.bmj.com/content/77/Suppl_2/1778.2

Clinical educational intervention in emotional and cognitive domains in the experimental group included classroom activities and outpatient consultation, evaluating healthy lifestyle knowledge that included physical activity, feeding habits and stress management
Conclusions The educational intervention modified the conceptual perception of SLE and Metabolic Syndrome as well as some domains of lifestyle.

more to follow re diabetes. so many nutritional overlaps among the various chronic illnesses.

[jimmylegs]

ha already knew and have successfully applied this basic info for a diabetic TiMS member's benefit, but had not seen this particular study until now (hilarious, it was a bday present and i didn't even know):

Serum Magnesium Concentrations in the Canadian Population and Associations with Diabetes, Glycemic Regulation, and Insulin Resistance (2017)
full text http://www.mdpi.com/2072-6643/9/3/296/htm

"Total serum magnesium (Mg) concentration (SMC) is commonly used to assess Mg status. This study reports current SMCs of Canadians and their associations with demographic factors, diabetes, and measures of glycemic control and insulin resistance using results from the Canadian Health Measures Survey cycle 3 (2012–2013).
...
"A substantial proportion of Canadians are hypomagnesaemic in relation to a population-based reference interval, and SMC was negatively associated with diabetes and indices of glycemic control and insulin resistance."

there may ;) be a reason i mentioned the magnesium as an example first, among the various other nutrients of valid concern in chronic illness cases

ha hells yes open data sets https://open.canada.ca/data/dataset/8cc ... 56579158c6
i'll be playing with that info when i have some more time. will be very interested to see whether i can use 0.95 mmol/l as a cutoff to run analyses.

[nathalie70]

I don't have a special diet. I watch for sugar. I like eating nuts.

[jimmylegs]

ok, so be it. without specific details, i don't have much to offer except good luck to you

[Scott1]

Hi,

I think you are on the receiving end of the all too common problem of your medical advisors just guessing and not empathising hence the delays. They clearly don't know how to address your obvious earlier question about fatigue. They aren't tackling the question of pain, albeit, that can be subjective and hard to measure.

I can't stress enough that lupus is not what this site is about. If your total treatment for that is just ibuprofen then that doesn't sound like much of a plan for the future. If that's all it is then dragging in MS is just like grasping at straws.

For fatigue you could try what I have found to be helpful which large doses of CoQ10 (as long as it's in a d-tocopherol base in a gel capsule) and 2x 1000mg daily of aceytl-l-carnitine. A bit of magnesium might help. There are a lot of other things I do but I'm not comfortable talking about lupus as I don't have it.

You may need to find a different circle of advisors. The good ones cluster together and refer to each other but so do the poor ones so you need a good network.

Regards,

[NHE]

Several conditions can produce similar MS type symptoms. One of these is a vitamin B12 deficiency which can cause lesions in the brain and spinal cord. Were you tested for B12? Do you know your specific results, usually in pg/mL?

A standard B12 analysis usually includes the following tests, serum B12, homocysteine and methylmalonic acid and red blood cell folate. Homocysteine is a cardiotoxic amino acid that can build up when B12, folate or B6 is low. Methylmalonic acid is another biomarker of low B12 status, but unlike homocysteine, it's thought to be more specific to low B12. Folate is needed to covert spent B12 back to the active methylcobalamin form. If folate is low for an extended time, then it can induce a B12 deficiency. Measuring red blood cell folate is better than serum folate as it's less affected by daily changes in dietary folate and gives a better assessment of long term folate status. Things that can inhibit methylfolate include SNP mutations in the MTHFR gene and green tea. Folic acid and the drug methotrexate can also inhibit folate.

[jimmylegs]

"I don't have any good blood work result to show because they only one's I have done are normal test like
cholesterol and glucose."

[nathalie70]

I m sorry guys ..i don t think i belong in this forum . You see i haven t been diagnosed yet. It s not my fault if I don t have any blood work result to give you. I only take ibuprofen because my family doctor won t give me anyrhing before I see a neurologist.
.