Numbness, tingling, tight chest

[franniek]

This is my first time posting here and I am grateful to have a place to go where people understand this confusing and frustrating road to diagnosis and to feel there may be a friend to talk to about it.

I have had muscle spasms for years that have increased in both frequency and intensity over the last 7 years. I can hardly go 30 seconds without a spasm. I started having numbness/tingling about 6 months ago with it increasing in strength and frequency over the last 2 months. It started with an 'ants crawling on the skin' or tingly spine feeling, but I am now to the point where I will wake up in the middle of the night with numbness in my arms, legs, or lips which tends to dissipate throughout the day most of the time but sometimes will remain. I have not experienced any muscle weakness. Brain MRI came back non-diagnostic but showed a few small inconclusive legions that are non-diagnostic. Have had severe migraines/eye pain which has been better over the last 2 weeks. Neck MRI came back normal and it appears no damage to optic nerve.

2 weeks ago, I started having a dizzy spell and had to lay on the ground. My chest got really warm/tingly/tight and I started to worry I was having a heart attack or stroke. It was really scary and I felt immobilized by it for several minutes. I felt sweaty and short of breath and a really strange sensation in my chest for about 20 minutes. This is unlike anything I have felt before and made me want to push to understand what is going on since the symptoms are progressively getting worse. I just got a C-spine MRI that came back normal, just showing mild arthritis. I also had a few strains of Lyme disease show up positive but the neurologist said the strain reactions were normal and nothing t worry about. She seems to brush off just about everything I am saying and not take me seriously- I know my body and that something is really off; it may or may not be MS but it is definitely significant. I guess I can say I just have a feeling it is a good possibility. Autoimmune is really strong in my family - my sister was diagnosed with Lupus around my age. I would just like to get to the bottom of it and not rule MS out before really doing due diligence because the road to diagnosis seems to be unique for everyone.

I guess I was hoping to see if anyone had any thoughts or suggestions for this case on what to do next if my neurologist is not really taking the time to get to the bottom of things. She wouldn’t let me schedule an appointment to review the findings on the MRI.

[canadianrunner76]

Hello I have had similar to what you are going through, mine has been recurring episodes though.6 yrs ago, my whole bottom half just got numb and weak and I was immobilized for 2 wks, not running or working. Then again 3 years ago and this time it last 3 months. MS at that point was considered and a nerve conduction test was done and I came out in the clear.

Last summer was when I became really intolerant to the heat, developed nose bleeds lasting 30 mins and shortness of the breath, rapid breathing at times. Got tested for my heart and everything was clear. Seemed better over the fall and winter but it was after March 28 2017(long run day 18k) where my body stopped working. Numbness, muscle spasms, at the time it was all focused on the legs, it wasn't until I went to the Neurologist who specializes in MS that he noticed the significant weakness in my arms.

He booked me for an MRI of head and spine which at that time seemed long and was in July. Since then all it shows is mild arthritis and bone shards on both sides of C5 and C6, brain is clear. He also ordered bloodwork in April, I tested positive for autoimmune disease, and ANA, low WBC, low neutrophils and a high titre and the Neuro kept thinking now it must be Lupus and was strong thinking this until he saw the results of the MRI and he has dismissed me.

If you have a family doc, push it and get another opinion or else get another referal. I pushed my family doctor, he thought at first it was all a low back issue due to running injury, he told me to go to physio but after 6 weeks when my PT saw no improvement she told me to go back to the family. I had a bladder accident my fam doc told me go straight to ER, which I did and after waiting 5 hrs, the ER doc wrote a note spelling out to my own doc ''girl needs neuro poss MS/Stroke'' and that is what got me to the Neurologist or else I would be sitting here with no answers. Push and be an advocate for your health, I have an apt in October to see the Rheumologist. We shall see what happens from here.

As a person who used to be active, and be on my feet all day this has been a process. I couldn't walk in my back yard 4 months ago without shaking legs and extreme tired. I never thought I would take even simply grocery shopping for granted but I did.
The exhaustion, the intolerance to the heat, when I am in the sun, I react to it and get what I am guessing Reynaud's when I am cold. I still get the tight chest where I can't breathe, heart palpitations and tingling but I am not in pain only stiffer in the damp days.

[jimmylegs]

hello cr76 and welcome

couple questions - have any docs referred you in the public health/preventive direction, vs the diagnostic/clinical care direction? any referrals to sports dietitian? has anyone requested/evaluated a 3 day food/fluid/supplement/medication diary in relation to your fitness regimen? i'll be interested to know.

you may already know that many of your symptoms have potential nutritional root causes. these key nutrients are also known to be low in chronic diseases including ms. it's best to pursue optimal health in parallel with any pursuit of diagnosis. you may already have seen that there are many topics here at TiMS discussing athletic nutrient depletion, with links to related research.

[NHE]

Welcome to ThisIsMS Canadianrunner,
It would be great to know what blood tests you've had done and what the results were.

[canadianrunner76]

Thank you Jimmylegs and NHE

I have looked into the Holistic angle, had my fair share (6 Sports Injury Doctors) in three years look at me as Running has always been to blame for what is perceived as injuries initially, however once delving in deeper shows otherwise. The last sports expert I went to could not explain the loss of how little leg power I had. I went to a chiropractor actually several over the past four years ( don't like them here) and they have actually worsened the symptoms.

No one has requested any fluid samples regarding nutrients aside from bloodwork done three times in the year and all my irons, potassium, b12, Vitamin D etc all meet the required amounts. Nothing was abnormal aside from one time being labeled ''High'' in Thyroid, next test cleared it.

The only thing significant is that my Neutrophils went from a 7.2 in March 2016 to 1.7 March 2017 and WBC went from 9.8 to 3.7.

I have no other meds until April this year, where I am on Lyrica for the nerve pain. In March this year when everything just stopped a Foot Specialist found I had heel bursitis and plantar fasciitis and the numbness in my arm, weakness in hands is explained by the bone shards in my neck but doesn't explain the bottom half isn't.

3 years ago, I had the nerve conductivity test done and I was clear. Cardiovascular disease is in my side of my mom but I was tested at the time as one in three of her children could of had it. It is in the back of my mind as both my dad and my mom were runners, My mom ended up getting three feet of her bowels removed, due to a blot clot that they found after she went undiagnosed for years with symptoms in her hip.
Dad ended up with degeneration of the lower half of his spine but he never replaced his shoes and he ran a ton more than I could ever dream to do. I keep my mileage respectable, or I did as I wanted to avoid what he did.

I work in a Running Store and I am Health and Fitness Certified so I hope I know what I am doing health, nutrient wise but who knows. I didn't think I would ever take ''just walking'' for granted.

[jimmylegs]

hi

'normal' is a deceptive term. treatable deficiencies have been documented within the 'normal' ranges for several serum nutrients.

if you are willing to share your serum ferritin, serum cobalamin and serum 25(OH)cholecalciferol results, we might be able to provide some tips.

there are several other useful tests to consider, in the interests of making sure your serum nutrient profile is as little like an ms or chronic illness patient's (often low normal), and as much like an optimally healthy person's (often high normal on average) as possible. these include serum zinc, serum copper and serum magnesium.

there are more but this is a good place to start. if i've learned anything since getting this dx it is how much i did NOT know about nutrition beforehand, in spite of thinking i was pretty smart about it. i consider my dx to have been an excellent wake up call because i'm *so* much better informed these days.

will look forward to info if you have any you're comfortable sharing!

[canadianrunner76]

Hello

Ok looking at my three past bloodworks in the past year, Ferritin was 161 and normal is 10-291, my b12 was 395 and normal range is 198-615 and Vit D is 2.37mmmol/l normal range is 2.15-2.60. Been pretty consistent for the year. Years ago I was b12 deficient and anemic but that was corrected.

Seems pretty ok to me.

[Zyklon]

Please try boosting your B12 to 600+ and D3 to 2.775. Any magnesium, iron, calcium test?

[jimmylegs]

se fe 161 looks high if anything, to my eye.
do you have units with that? ng/mL or pmol/L? i like to keep mine around 80-100 ng/mL.
if your result is in pmol/L, the conversion factor is 2.247. works out to 70s, not bad.

b12: again, units? if pmol/l, then w conversion factor 0.738, your 395/.738 works out to 535; again not bad.
if in pg/ml, then yeah you're in some low normal grey area and it would be best to pop that up into the 500-600 ballpark.

re d3 - stated units and given reference range look like serum calcium levels. can you confirm that is a result and range for serum 25(OH)vitamind3?

second(third?)ing z's interest in serum magnesium, and reiterating value of serum copper and zinc testing.