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What to do when doctors can't diagnose? Tingling/buzzing in arms and legs.

I have already seen a number of doctors - so far no one can tell me what's wrong. Now I'm at a point where I don't know what else to do or what other specialist to see.

Symptoms:
* Tingling/buzzing in arms and legs
* Some muscle twitching
* Worse when going to bed in the evening, sometimes very strong episodes at night (without medications)
* Sometimes shaking legs after walking, like after a day of skiing
* Almost every single night (~8/10) I wake up with my arms fallen asleep

Development and actions taken:
* About 5 weeks ago I noticed a strong tingling/buzzing in my lower right leg and foot, during that night, it spread to both arms and the other leg. No pain, no numbness. The first symptoms occured around 3 hours after finishing a day of diving in Panama. Both dives were conservative: Dive 1 at 17m max, 10m average, 5m safety stop. Surface interval 2:20h. Dive 2 at 15m max, 10m average, 5m safety stop. No sudden changes in depth or other irregularities occured. No history of DCS or other problems previously.
* Went to a regular hospital: full blood work up, urine, electrolytes, all normal. Recommendation by 2 different doctors was "wait and see".
* Since I suspected DCS, I traveled to Panamy City to see a hyperbaric specialist and was subsequently treated for DCS Type I with 3 HBOT session (1x Navy Table 6 at 5hrs plus an additional 2x 90 min at lesser depths). I was released from the hospital without symptoms, but they started again several hours later.
* The hyperbaric specialist concluded symptoms not related to diving, prescriped Daflon (micronized flavonoids/Hesperidin, to improve blood flow) - this eased the symptoms.
* After getting cleared for flying over a week later, returned to Germany to see my GP. All blood tests and urine normal, including CRP and Creatinine, potassium/electrolytes. Refered to Neurologist
* Neurologist did a nerve conduction velocity test, normal. Requested cerebrial spine MRI, normal. Prescriped Pregabalin, requested to stop taking Daflon.
* GP has no recommendations other than Neurologist.
* Neurologist has no recommendation what steps to take next.

Summary:
According to every test done, I'm "okay" but the symptoms are consistent, disturbing, and at night, when a strong episode hits, can even cause panic attacks. There is no pain or numbness (other than when the arms wall asleep) but the symptoms are consistens at a low level and stronger symptoms recurring at night.

What should I do next? Who should I talk to?
3 Responses
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Avatar universal
The panic attacks are caused by your mind fearing there is something wrong. The tingling does not cause a panic attack, and if the neuro guy doesn't think there is anything that can be done then it is doubtful that there is. I get prickling all over my body every day, but it isn't anything serious and my neuro guy doesn't have any answer for it so I have learned to ignore it, and you may end up having to do the same.
Helpful - 0
20803600 tn?1546262537
COMMUNITY LEADER
Nerve conduction tests typically will not reveal anything unless at least 3 months have lapsed from the onset of symptoms.
Panic symptoms are not related to the tingling numbness. You said it's worse at night? What sleeping position do you normally sleep in? Elbows bent, knees bent? You could be compressing some nerves while sleeping.
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Avatar universal
Sorry, let me clarify: I know the panic attacks are not related, I just mentioned this to underline how bad the symptoms get.

Regarding the sleeping: I usually start on my back, but eventually turn to the side. My sleeping habits haven't changed, it's from one day to the next that these have started. I'm very convinced that it is exactly as you're saying, backhurtz, that a nerve is getting compressed, but with such a sudden change, from no symptoms to getting this almost every night (plus the twitching and the rest) makes me think that something has to have changed.

I have an appointment lined up with a specialist for tropical diseases (although I don't expect her to find anything) and an osteopath (same, really).

I'm really just looking for insights where to turn to next. I'm still convinced it's neurological, but the neurologist won't see me anymore (time to find a new one I guess).

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