Purple Toes, Red Hand, Muscle Wasting, Weakness and IKYNMD
May 11, 2020 8:24 AM   Subscribe

Preface, have exhausted my own capabilities in knowing how to proceed. I don't take medications, background history is hyperparathyroidism and impaired glucose fasting. Tested 3x negative for ANA, Rheum Factor. Contracted Lyme 20 years ago.

So I've been chronically ill for a number of years, symptoms are diffuse, but they are constant. The circulatory issues were chalked down by neurologists and dermatologists to be either Raynaud's or chillblains. No one could explain the hand swelling when I walk or why my toes are constantly either red or blue/purple. There is a mottled color to my legs and arms as well. In a hot bath they will revert to pink but once out the discoloration returns.

Structurally there are a few things that are going on. I have cervical stenosis at C5/C7, muscle wasting of one leg, TMJ and tinnitus (non-stop). I've also had a few heart issues, namely SVT's. I had a lamenectomy at l3-l4 and have scoliosis at the thoracic level. Have done MRI's and CT's that confirmed stenosis at the cervical level and degeneration with osteoarthritis throughout the spine. I've done EMG's in the past that showed deficits due to Carpal Tunnel.

Been to neurologists and neurosurgeons, also orthopedic surgeon. Only the orthopedic surgeon said to have an anterior cage put in at the l3-l4 level to prevent the spine from collapsing. That was a few years ago. Now I have osteopenia and orthopedic surgery is not an option. Because I've been feeling worse in the last 2 weeks (vertigo, intermittent numbness (face, hands, legs and feet) and muscle weakness I'm getting desperate and don't know if this is systemic, neurological or vascular. If the hive-mind can help with some piece of information on diagnostics or anything that can be of value in moving forward with finding answers, it would be incredibly appreciated.
posted by watercarrier to Health & Fitness (13 answers total)
Can you please post scans of all blood etc tests with your identifying info blacked out? The "normal" range is quite broad and sometimes people at the edge of normal on a few things can still be sick.

I'm not a doctor and obviously any MeFite doctors can't diagnose you on this post, but I think seeing your test results would be helpful because someone might notice "oh hey my tests looked like that and I ended up having [condition]."

Random thoughts on possible mechanical causes for the hand and toes: Is the swelling in your dominant smartphone/mousing hand? Could your socks and shoes be too tight? I have psoriatic arthritis, which makes my joints super sensitive to any little thing, and I sometimes get swelling in my dominant hand from overuse and poor circulation in my toes from tight sock cuff elastic and/or shoes.
posted by Jacqueline at 8:39 AM on May 11, 2020 [1 favorite]

Also, for the recent numbness and weakness, has your routine changed during lockdown and as a result are you spending a lot of time with your neck in a different posture/position than pre-lockdown?

I ask because a pinched nerve in your neck can cause numbness and weakness elsewhere in your body. If you've had a big increase in time spent lying around in bed or on the couch looking at your phone/laptop/TV, that could definitely fuck up your neck if you're not being super mindful of ergonomics.
posted by Jacqueline at 8:46 AM on May 11, 2020

Posting blood tests - Neck could be supported more, yes.
posted by watercarrier at 8:56 AM on May 11, 2020 [1 favorite]

They didn't test your vitamin D levels?
posted by Jacqueline at 9:06 AM on May 11, 2020

I ask about vitamin D because my old rheumatologist came out of retirement just to test all his former practice's patients for vitamin D deficiencies after he read a medical journal article about it. He discovered that over 85% of his practice's patients were deficient. Most of his patients experienced significant symptoms improvement within a year of beginning supplements.

Vitamin D isn't a magic bullet and the deficiency isn't necessarily the root cause of your problems but being deficient seems to make a lot of conditions a lot worse than they would be otherwise.

So I'd urge you to get that tested if you haven't already.
posted by Jacqueline at 9:11 AM on May 11, 2020 [2 favorites]

Blood tests for D was lower than normal. I stopped supplementing for 1 week to see if there'd be a change in PTH and calcium. In hyperparathyroidism there is usually low D, high Ca and elevated PTH.
posted by watercarrier at 9:18 AM on May 11, 2020 [1 favorite]

I hate to ask the obvious but since you say you've noticed a change in the past two weeks - is there any chance the difference might be coronavirus symptoms? Circulatory issues and dizziness are starting to be recognized as symptoms, apparently.

Other than that all I can say is that my hands also swell up (and can feel like they're burning) if I walk, especially if it's a long or even slightly vigorous walk. I always attributed it to general Reynauds-type circulation issues. OTOH I have chronic unexplained rheumatological issues so who knows. You didn't mention rheumatologists in your question; I assume you're seeing one, but if not they're usually the address for things like that.

I'm so sorry you're dealing with this and wish I had more useful information.
posted by trig at 10:30 AM on May 11, 2020

Have you read about how ‘Frostbite’ toes and other peculiar rashes may be signs of hidden coronavirus infection, especially in the young (WaPo, Apr. 29, 2020 / MSN reprint)? I am particularly concerned that you report "feeling worse in the last 2 weeks (vertigo, intermittent numbness (face, hands, legs and feet) and muscle weakness," so I encourage you to contact a medical provider immediately, including because young and middle-aged people, barely sick with covid-19, are dying of strokes (WaPo, Apr. 25, 2020 / MSN reprint). However, I am not trying to speculate on whether you may have COVID, but I am concerned that your worsening symptoms sound serious enough to warrant a consultation with a medical provider to get more specific advice on how to proceed - I'm a chronic neuro and cardio patient, so I tend to be on alert for certain groups of symptoms, and have been encouraged to err on the side of calling with any questions. More generally, I've found endocrinology to be an important part of my care team, so an endocrinologist referral may be an avenue to explore for possible autoimmune etc. issues.
posted by katra at 10:32 AM on May 11, 2020 [2 favorites]

Also, a particularly dismissive doctor once told me to go to the Mayo Clinic (and stop bothering him). The timing is bad and I don't know whether it's affordable for you, but if it's possible then going to one of the expert centers on rheumatological issues might get you somewhere.
posted by trig at 10:34 AM on May 11, 2020

Rheumatoid factor was negative, rheumotogists (2) couldn't help.

The discoloration is ongoing, the vertigo is the only new symptom, numbness and neuropathy were present in the past but did self-resolve. Now these symptoms have returned with dizziness and an altered gait. It's not virus-related.
posted by watercarrier at 10:41 AM on May 11, 2020

I used some of the information in the articles I posted above to talk about my symptoms when I consulted with one of my medical providers, from the perspective of how people with chronic conditions have had their ongoing care disrupted during the pandemic (which is why, e.g. U.S. hospitals promise new safety measures to ease patient fears after coronavirus crush (Reuters / MSN, May 2, 2020)), and because there is a fair amount of detail in the articles that helped give me additional vocabulary to talk about my symptoms, which I also described in a written overview sent in advance of the phone consult. As noted in this WaPo article (Apr. 19, 2020), "At MUSC, another doctor worried that mild stroke patients are enduring symptoms such as numbness, loss of sensation or weakness on one side of the body at home. Symptoms of small strokes can be transient, but they also can be warnings of larger strokes to come." So I encourage you to report your symptoms, including the recent onset of "altered gait," to a medical provider, based on the what the articles are saying and my own experience seeking medical care, just in case you have a condition that is treatable but depends on timely access to medical care.
posted by katra at 12:50 PM on May 11, 2020 [1 favorite]

I see a rheumatologist although I don’t have rheumatoid symptoms on blood tests. I got given a clinical diagnosis based on my medical history and she said basically that while they’ve got tests for lots of the blood disorders, new and unusual ones are still being discovered and I clearly had something blood related so they would treat it. I saw a lot of neurologists too and I was lucky to get someone who said we’ve ruled out 99% of possible causes let’s call this idiopathic and focus on treatment. I was disappointed not to have a diagnosis but years on, after experimenting with different meds, I am so much more functional. Sometimes you really are a weird medical case - find a doctor to treat symptoms, rather than a diagnosis/cure. That is not what a lot of doctors are trained to do so it can take time to find someone big picture thinking.

I hope hope hope you get a clear answer but if you don’t, i want you to know that eventually having an unknown causes chronic illness can be ok. I appreciate my luck in my doctors (I live near a university hospital) and it did take at least a year for me to get over the disappointment and anger at not having clear answers.

(Also reynauds I thought had that awful cold water test that shows clearly what it is. How are they just guessing?)

And I did get really bad vertigo with an inner ear infection. I have bad balance overall so even mild vertigo is debilitating. I’ve had tingling at fingers from both vitamin deficiencies and toxicity, which seems to be a circulatory issue - what most people can tolerate, I’m sensitive to. It resolved with different dosages of supplements.

Have you had an MS scan? That was one condition they’ve checked repeatedly for me, all clear but it has a lot of related symptoms.
posted by dorothyisunderwood at 7:43 PM on May 11, 2020

Has the possibility of Charcot-Marie-Tooth been looked into?
posted by slightlybewildered at 7:45 PM on May 12, 2020

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